Personal Fundraising

Personal Fundraising

Our Personal Fundraising Initiative has been developed to assist families, individuals, disability support groups or clubs and schools to raise funding towards specialised equipment and aids, intensive therapy, medical and pharmaceutical requirements, respite and nursing assistance, home and vehicle modifications, sport and recreation funding as well as many other areas of support.

How Personal Fundraising can help you:

  • Members are able to raise the funds needed to achieve their goals by using the security of a registered charity with deductible gift endorsement.
  • Sunshine Butterflies will help members create their own personal fundraising page online. 
  • Members are able to send their page link to friends, family and colleagues who can read their story, make a donation and leave a personalised message.
  • Personal Fundraising allows prospective donors to give directly to an appeal of their choice.
  • Creating a personal fundraising page is quick, easy and most importantly secure. Donations are collected online and automatically transferred to Sunshine Butterflies who will then allocate the amount to the individual, family or group once the desired goal is reached.

Families, individuals, disabled groups or clubs wishing to apply for a personal fundraising membership with Sunshine Butterflies, please contact us to apply and we can get started!

Looking to become a member? Click here

Once your membership application is approved, a representative from Sunshine Butterflies will contact you to set up your new profile.

Please contact us find out more about how personal fundraising can assist you.

Campaigns

Fundraising Appeals

Hello, I'm Tiger Taylor

Hi, my name is Kezzia and this is our cherished boy Tiger who just turned two. Tiger was born with a Tracheo Oesophageal Fistula, Oesophageal Atresia accompanied with Tracheomalacia. In simple terms Tiger was born unable to swallow as his oesophagus was not connected, instead his oe...

Read my story

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\n

As Sunshine Butterflies receives no government funding and exists only through the kind generosity of community members such as yourself, all fundraising\n efforts are greatly appreciated. By supporting this vision to improve the lives of individuals and their families living with a disability, you\n are making a huge difference to many lives suffering tough times.\n
\n

\n

There are many FUN and CREATIVE ways you, your school or workplace can fundraise for Sunshine Butterflies.

\n

We would love to hear from you, so please contact us today and we can have a chat about your idea or help you\n get started to fundraise for a great cause.\n
\n

\n

Not matter how great or small... Every donation helps Sunshine Butterflies to provide an enhanced quality of life and opportunities for individuals\n and families living with a disability.\n
\n

\n

\n
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\n

As Sunshine Butterflies receives no government funding and exists only through the kind generosity of community members such as yourself, all fundraising\n efforts are greatly appreciated. By supporting this vision to improve the lives of individuals and their families living with a disability, you\n are making a huge difference to many lives suffering tough times.\n
\n

\n

There are many FUN and CREATIVE ways you, your school or workplace can fundraise for Sunshine Butterflies.

\n

We would love to hear from you, so please contact us today and we can have a chat about your idea or help you\n get started to fundraise for a great cause.\n
\n

\n

Not matter how great or small... Every donation helps Sunshine Butterflies to provide an enhanced quality of life and opportunities for individuals\n and families living with a disability.\n
\n

\n

\n
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This is Abbey, Our cheeky, funny, music loving, water princess. She is almost 6, She has an 8 yr old brother with ASD and ADHD. Abbey was a dream baby,\n however I started to investigate a few physical and developmental concerns when she was only 5 weeks old, by 16 months old she had been admitted to\n hospital 5 times, had a CATscan, X-rays, blood tests, MRI and an EEG. By the time she was 2 Abbey had been diagnosed with A-Typical Rett Syndrome,\n Global Developmental Delay, PICA, Sensory Processing Disorder and PDD-NOS.

\n

She started walking at 3.5 yrs, she is non stop babbling and signing some very simple words but cannot talk. These were All things we were told she'd never\n do. These things have all happened due to the extensive amount of therapies she has received. Speech Therapy, Occupational Therapy, Hydrotherapy, Music\n Therapy, Swimming Lessons and Physiotherapy. We treat abbey like any other 5 year old, but she still needs many more years of therapy, specialist appointments,\n medication and hospital stays. She attends prep at a special school with the intention of her joining her brother in mainstream school one day.\n
\n

\n

If you would like to donate towards Abbey's continual progress, we will be extremely grateful and it will be forever appreciated by our family!\n
\n

\n

Abbey would tap under her chin, which is her way of saying THANKYOU!

\n

Thank you in advance,

\n

Love, Lucy, Naaman and Jayman. xoxoxox\n

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Hi my name is Abby and I am a beautiful cheeky 3 year old but underneath my smile I hide a lot of pain. For the past 2 1/2 years I have been suffering\n with early onset Systemic Juvenile Rheumatoid Arthritis also known as Still’s disease. It is a rare type of arthritis and it affects all of my joints\n as well as my internal organs and lymp-hnodes.

\n

I woke up when I was 10months old with a sore knee and within 2 weeks could no longer move my limbs or be touched as it hurt all over. I was in and\n out of hospital for 6 weeks before they diagnosed me. I suffer daily from swollen and stiff joints as well as rashes, high fevers, red face and nasty\n side effects from my medication. I have to avoid direct sunlight as the steroids and chemotherapy tablets I am on make my skin prone to burning to\n the point of melting, the medicine also makes me bloat and it is very strong. I have a very weak immune system as arthritis is an autoimmune disease\n as well as my medications being immune suppressants, so I get sick a lot and I have to be very cautious when we are out not to share anything with\n other people and to avoid anyone who might be sick as my body doesn’t have the ability to fight the germs. I have been hospitalized 4 times this year\n from complications due to normal childhood illness, most recently I was hospitalized due to a common flu which turned to systemic infection causing\n me to have convulsions and hallucinations with severe temperatures.

\n

My family and I had to move from the coast to Sydney so I could be close to the wonderful doctors and constant treatment but we have since moved back to\n south west rocks as living in Sydney seem to make my health worse and the Dr said it was due to overpopulation and high germ factor. As well as my\n daily medication I have steroid injections every 4 months to all my joints via day surgery to help me get movement and some comfort, I try and be brave\n but its scary!! Its also hard on my family seeing me so sick and scared as well as being very costly as the government doesn’t fund juvenile arthritis\n and Centrelink said they don’t recognize my disease yet, it costs my mummy and daddy around $1000 a month for all my treatments and medications.\n I also have to have fortnightly blood tests which is a battle as I don’t like it and my arms are scarred from having so many needles making it\n hard for the nurses to access my veins the only thing i like is the wiggles band-aid at the end. I have to have my eyes checked with the ophthalmologist\n every 8 weeks to make sure my eyesight isn’t diminishing which is a common occurrence linked to arthritis which recently has been giving me problems\n with vision in my left eye making it hard for me to see.

\n

The doctors can’t give me a future prognosis and there is no cure we just have to take day by day and hope the pain isn’t so bad. We appreciate all your\n support and kind donations which go towards the costs of my medical treatments and the travel expenses to and from the hospital in Sydney.

\n

Abby xx

\n

 

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Aria was born in February 2014, we thought all our dreams had come true, having a little baby girl that I particularly had always dreamt of having. It\n was a very bumpy ride right from day one. Deep down we just knew that there was something not quite right, but the doctors kept doing tests and everything\n kept coming back normal. I felt like I was losing my mind, I knew there was something they were missing. So I ended up taking Aria up to the children's\n hospital in Brisbane when she was about 5 months old, and it was after an MRI that they found the issue and eventually diagnosed Aria with Aicardi\n Syndrome. That day our world fell apart. Our precious little baby girl was going to be dealing with life long issues that neither of us could fix for\n her. It did take us months to get our heads around what we had been dealt with and how we were going to deal with it moving forward.

\n

Aicardi Syndrome is an extremely rare genetic disorder. Which means there is practically no support groups specifically aimed at Aicardi Syndrome in Australia.\n

\n

Aria has a lot of things to deal with in her life, impaired visions, hearing loss, non verbal, developmental delays, poor feeder, scoliosis and a dislocated\n left hip are some of the daily things we are dealing with but she is one tough little girl. She has always shown us signs of being a fighter, and we\n also are fighting in her corner for a better quality of life for Aria. Aria currently sees a group of specialists and paediatric therapists which all\n comes with an expensive price tag.

\n

We are also faced with residence issues, both myself and Wayne are New Zealand citizens (living in Australia for 5+ years now) so even though Aria was\n born here in Australia, because we are not Australian citizens, nor can we apply to be due to the citizenship laws being changed in 2001, we are not\n entitled to any funding, carers benefits, disability grants and many more things. This makes our financial situation a real struggle. Not to mention\n that fact we are also away from all of our family. Yes, this makes it hard on us, we don't have any extra support but we love living here in Australia,\n we purchased a beautiful home here in Queensland three years ago and we don't want to give up our dream of living here. But as you can see all of these\n factors make a very hard financial burden for us. I would love to be able to stay home and care for Aria but its just not possible with so many therapies\n and treatments to pay for. Now as Aria gets older and bigger, she is starting to need more specialised equipment to assist her daily needs.

\n

Aria is now two and a half and is a happy little girl, she is always smiling and giggling and showing signs of being a cheeky little girl. She has a beautiful\n smile that lights up her whole face and anyone around her. Aria loves bath time and swimming, reading, swinging and being pushed around in cars and\n bikes. She loves being around other children and people in general. Aria has recently learnt to go forward and backwards on a little trike, which is\n really delightful to watch her move around with no help from anyone else. With lots of practise Aria can now stand, with support but she absolutely\n loves standing and is so proud of herself as we are watching her reach this milestone. We are positive that Aria will walk one day.

\n

Aria has scoliosis of the spine and will be very soon be put into a spinal cast. This will hopefully stop or at least slow the progression and buy us time\n before she will need a spinal operation.

\n

We are very appreciative of your support and any donations made. With your help we can give Aria the extra help she needs to hopefully live a normal happy\n healthy life one day.

\n

We thank you from the bottom of our hearts for your donations and support to help our little princess.

\n

Wayne, Regan & Aria\n
\n

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\n

Avalon was born in 2011 at 30 weeks gestation, via an emergency caesarean section. Due to her low birth weight of just 1024 grams and a severe infection,\n Avalon suffered damage to the white matter in her brain. This is a condition known as Periventricular Leukomalacia (PVL), and is commonly fatal\n to premature babies. \n
\n

\n

Avalon spent eight weeks in the NICU and SCBU units in total. She was the 'Feisty' child according to the nurses, which we came to realise was a blessing, as she will need all of that strength for the life journey she is on. By the time Avalon left hospital she was 37 weeks gestation and weighed 2.2 kg. This weight is half the weight of a healthy child born at full term. When Avalon was one year old she was diagnosed with Cerebral Palsy spastic diplegia and dystonia. Avalon's condition affects one arm, both of her legs and her balance. 
\n

\n

From 33 weeks gestation, Avalon has been seeing Physiotherapists, Occupational Therapists, Speech Therapists and Specialty Therapists. She has responded\n well to all of these therapies and really enjoys the interaction and the feeling of achievement she gets.\n
As parents, we are constantly on the lookout for treatments and specialised equipment that will give Avalon the best opportunities. In 2013, we\n discovered a treatment centre called NAPA Center, in Los Angeles. The centre specialises in Intensive therapy, which utilises a special suit. Three\n weeks of therapy at The NAPA Center is the equivalent to twelve months of traditional therapy, and combined with all of the regular therapies she\n requires, the results are very encouraging. In March 2014 Avalon completed a three week Intensive Model of Therapy (IMOT) with outstanding results.\n If we can continue to provide these intensives three times a year, along with the specialised equipment and regular therapies she requires, Avalon\n will have a very good chance at gaining some valuable independence in her life.

\n

Avalon was also recently accepted for an incredible surgery in the US called Selective Dorsal Rhizotomy (SDR). This surgery will permanently remove\n a large amount of the muscle tightness that cerebral palsy causes, allowing her to live in a body that will not wear down and cause her immense\n pain. The cost of the surgery including air fares (travel), accommodation and living expenses is around $100,000.

\n

Following her surgery Avalon will continue with her regular and intensive therapy programs to gain the strength she needs to continue forward in her\n ‘new’ body. This opportunity for her is an amazing one and she is very lucky to have been selected after meeting strict criteria. \n
\n

\n

With the opportunities available, Avalon will achieve amazing things, she deserves that chance, and we thank you for helping her to have that chance. 

\n
\n

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\n

Meet Beau, our brave little boy who has a heart of gold and an infectious smile. Beau is only 6 years old and throughout his short life, has faced\n and conquered many challenges. Sadly for Beau, these challenges are continuous and there are many more ahead as he has a condition called Prader-Willi\n Syndrome.

\n

Prader-Willi Syndrome cannot be prevented nor can it be cured. Because of his condition, Beau suffers from low muscle tone, no thermostat to regulate\n his body temperature, respiratory problems and a compromised immune system leaving him prone to lung infections, he also suffers development delays\n and short statue requiring growth hormones to control. To be eligible for the growth hormones, Beau is required to keep under a certain weight\n and the difficulty with this is people with Prader-Willi Syndrome are ravenously hungry and weight management is a constant issue for them.

\n

To help with Beau’s weight management and other symptoms, he is required to be involved in regular exercise and therapy programs. These include; swimming\n lessons, a personal trainer numerous times per week, speech therapist, physiotherapist, occupational therapist and a specialised dietician. These\n all come a huge cost for our family so we have set this page up to help relieve some of the financial pressure and still being able to provide\n Beau with the care and support he requires.

\n

Your support and generosity is so greatly appreciated by our family and will make such a difference in our life. From the bottom of our heart, we thank\n you!

\n

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\n

Casey Jean is 9 years old and has an epileptic encephalopathy with CSWS (continuous spike wave syndrome). The CSWS causes progressive disturbances\n in cerebral function as her brain is never truly resting (like a constant electrical storm in her brain) which results in associated issues of\n intellectual impairment, autism, epilepsy, attention deficit disorder, sensory processing disorder, extreme hyperactivity and lack of impulse control,\n motor control issues and behavioural disturbances.

\n

In other words, she is a handful! She is prone to unpredictable prolonged seizures requiring rescue medication that occur during the night. We are\n in the process of training an assistance dog, Max to alert us to Casey’s seizures which will allow her to sleep on her own, in her own bed, creating\n independence as she grows older.

\n

Casey’s condition requires complex, aggressive treatment with heavy medications, most with significant side effects, as well as ongoing therapies to\n keep Casey on an upward learning curve rather than her skills spiralling into regression.

\n

Casey does well with her weekly therapies but because she finds it very difficult, resistive behaviours hinder her progress.With Max by her side during\n these sessions he helps her to keep her focus and increase her interest in activities – the possibilities really are endless in tasks for Max during\n therapy lessons ie he chooses which colour pen to use, use dog treats in many different ways to aid with fine motor skills.

\n

A well trained assistance dog can notice and respond to changes in a person’s sensory level and intervene and help eliminate a potential meltdown.\n The dog can provide proprioceptive feedback for Casey (proprioception is how our bodies move and feel in space) as her proprioception is out of\n balance – deep pressure from Max and moving her hands through his thick coat can help get Casey’s proprioception back in sync therefore her thought\n process will then be more in sync.

\n

It can be a challenge for Casey to access the community safely. She is at constant risk of wandering and her communication issues prevent her from\n responding when called.She also has no sense of danger and will run straight into the street. Max is undergoing intensive training which will qualify\n him with public access so he may accompany Casey many places which will help her gain social acceptance and involvement as well help keep her calm\n and focused in public situations.Max will be anchored to Casey and help keep her safe and prevent her from running off.Max will also be trained\n to search and find Casey should she get lost in certain situations.

\n

The dog will also play a role in helping to improve Casey’s speech and sentence structure and commands as well as her self-care awareness. Her challenging\n behaviours will be better managed when she has her dog constantly by her side, protecting and encouraging her. Ultimately Max is in training to\n assist and respond to Casey’s individual and unique needs which is a very exciting concept indeed!

\n

We have created this page to help ease the financial pressure of the expensive specialised training, vet bills and for other ongoing care for the dog.\n The opportunity to have an assistance dog like Max join our family has already made such a huge difference to our entire family and we would like\n to express our gratitude for your interest and support in helping to make this opportunity a reality. Thank you.

\n

\n
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\n

This is the story of our gorgeous 2 1/2 yr old daughter Charlie Grace.

\n

Charlie was born three months premature weighing only 900grams. She was brought into the world early via caesarian at The Mater Mothers Hospital in\n Brisbane on St Patrick’s Day 2013. Charlie had a traumatic start to life. A roller coaster ride of ill health, rare complications and unfortunate\n events. During her 92 days in NICU at the Mater, Charlie suffered multiple infections, surgeries, a broken arm, four blood transfusions and other\n medical complications and challenges. At each turn Charlie defied the odds and finally was discharged home. She was in a fragile state for a long\n time at home and required a Stoma bag and 24 hour a day Oxygen. It was a constant struggle for a long time with many set backs and return visits\n to hospital. Gradually Charlie grew healthy enough to no longer require the oxygen and Stoma bag.

\n

Charlie’s development was significantly slower than most. It was hoped that this developmental delay was due to her rough start, however after genetic\n testing, it was revealed that Charlie had a rare Genetic condition called Mowat-Wilson Sydrome.

\n

Mowat-Wilson Syndrome (MWS) is so rare that there are less than 200 diagnosed cases world wide. MWS affects intellectual and Physical development.\n Many children with MWS have global developmental delays and speech is absent or severely impaired. It also can be accompanied with heart defects,\n Hirschsprungs Disease, Epilepsy, Microcephaly and other anomalies. On the flip-side, people with Mowat-Wilson Syndrome ALWAYS have a sunny disposition,\n show their affection openly to those they love and are very social. They understand more than what they are able to communicate.

\n

Despite the continual threat of seizures, physical disability, poor sleeping patterns, feeding issues and other daily battles, Charlie’s determination\n and excitement for life only grows larger and brighter. She receives ongoing treatment from Physiotherapists, speech and occupational therapists,\n nutritionists, cardiologists, neurologists and music therapy.

\n

We have set up this page to try and ease some of the financial pressures and help Charlie get everything she needs. Specialized equipment such as standing\n frames, walking devices, bathing & showering aids, special needs prams, beds, home modifications and lots of therapies (such as physio) are\n some examples. Charlie is not yet crawling, walking or sitting. We are working toward getting her to move independently. Charlie will ALWAYS require\n 24/7 care for the rest of her life. She cannot attend daycare so In-home support and respite for us is very important and positively impacts the\n quality of care that Charlie receives.

\n

One of the biggest decisions we face at present is whether to renovate our home to suit Charlie’s needs or in the near future move to a home and modify.\n We love our house, but it is not suitable for Charlie due to having stairs and various other design issues.

\n

Finally, it has to be said that we’re not really sure exactly what needs Charlie will have in the future given that her Syndrome is so rare and not\n a lot known about it. However, her greatest need of all is LOVE and she will always have plenty of that!!

\n

Charlie, at two and a half years old, continues to defy the odds. She is a very happy little girl and takes great delight in the small things. Her\n laugh is infectious and she has great sense of wonder. On meeting Charlie, one will realise how special it is to be in the presence of someone\n who has the ability to be truly joyful and display their love and affection unconditionally. In some ways she is the embodiment of what we all\n aspire to be – Happy!

\n

Thank you for your support and generosity! If you would like to follow Charlies journey please like her page on Facebook – Unite for Charlie\n

\n

", "itemId": 6401352, "name": "Charlie Grace Harris", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/charlie-grace-harris", "url": "/personal-fundraising-members/charlie-grace-harris", "releaseDate": "2016-09-01T00:00:00", "releaseDate_raw": "2016-09-01T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T13:35:48.2", "lastUpdateDate_raw": "2017-02-14T13:35:48.2", "counter": 7, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/charlie-grace-harris?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401352&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/photo 14.2.17.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Our beautiful girl is 6 ½ years old, she is the happiest kid you will ever meet. Chelsea loves being outdoors, swinging, riding for the disabled, having\n books read to her and her favourite TV show is The Wiggles. Chelsea was diagnosed when she was 13 weeks old, just a baby. She has Aicardi Syndrome,\n mild Cerebral Palsy, she is non-verbal and suffers with Epilepsy.

\n

She has been classified as disabled and takes several anticonvulsant medications to control her seizures and is developmentally delayed. Aicardi Syndrome\n is an extremely rare genetic disorder with virtually no support groups specifically aimed at Aicardi Syndrome in Australia. Many Aicardi girl’s\n do not walk or talk, are mentally challenged and require a full time carer. The severity of the Syndrome can vary so we are just hoping for the\n best and staying positive for Chelsea.

\n

It has been a long journey and a very bumpy road, it is never easy and quiet expensive raising a child with such complex needs. Chelsea requires a\n lot of care, specialist appointments and one on one therapy time. Visiting the Neurologist, Physiotherapy, OT, Speech therapy session, GP, plus\n school - Chelsea is one busy kid!

\n

Chelsea has recently learnt to walk with assistance in a frame, this is a huge milestone for her and a very long time coming. Persistence and perseverance\n has paid off and we are very proud of her. Although Chelsea will never talk, she shows emotions and understands most things you say to her, we\n are working on answering questions with Yes and No flash cards and use a POD communication book and switches.She is learning new skills to communicate\n with her friends and teachers at school, family and carers.

\n

Just going to all these doctors and therapist appointments is an expensive necessity. Plus the extra expenses of medications, respite, travel costs,\n nappies, AFO and SMO’s, specialised mobility aides, sensory toys, the bills add up to over $14,500 per year!

\n

We love Chelsea dearly and wish for her to be happy, healthy and able to live life to the fullest. Your support and generous donations are so greatly\n appreciated and will make a world of difference to the livelihood of our beautiful little girl Chelsea.

\n

Our most sincere heart felt thank you for your donations to help our precious little girl who deserves to live life to the fullest.

\n

Thanks, Melissa & Trent (Mum & Dad of Chelsea) chanceforchelsea@gmail.com\n

\n

**To follow Chelsea’s progress and follow her journey visit her Facebook page ‘Chance for Chelsea’ or website www.chanceforchelsea.com\n

\n
\n

\n
", "itemId": 6401353, "name": "Chelsea Hammel", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/chelsea-hammel", "url": "/personal-fundraising-members/chelsea-hammel", "releaseDate": "2016-09-01T00:00:00", "releaseDate_raw": "2016-09-01T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T13:38:56.477", "lastUpdateDate_raw": "2017-02-14T13:38:56.477", "counter": 8, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/chelsea-hammel?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401353&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/Chelsea Hammel 14.2.17.jpg", "TEMP - Old URL": "" }, { "description": "

\n

I’ve never understood why some of life’s biggest battles were given to the smallest of children. That was until I met my son, our first child, 17 months\n ago. Who knew such a tiny creature could have the heart of Phar Lap, the courage of a lion, and the bravery, resilience, and fight, of a full grown\n man. This page has been set up to Help Cooper Eat, because sometimes even superheroes need a helping hand. Our boy Cooper, has already endured\n more in his short time on Earth, than most would in a lifetime. Here’s his story…

\n

Cooper suffered very serious birth complications, which resulted in our baby boy being born lifeless. He went into cardiac arrest after becoming stuck\n during delivery, and required life- saving medical intervention for the first two weeks of life. We spent a month in hospital, and his ill health\n and associated risks of attempting to feed, prevented him from developing and establishing the early feeding skills infants instinctively use in\n their first weeks of life. From day one, until 13 months of age, he was fed all nutrition through a Naso- Gastric Tube (tube inserted through his\n nose, and into the stomach), which came with an enormous amount of responsibility, problems, and ongoing trauma for Cooper. From very early on\n he had been defensive and frightened of anything that resembled, and reminded him of, the intrusive medical intervention he received in hospital.\n A bottle, spoon, sippy cup, teething toys etc, were all seen as threatening through his eyes. This aversion to eating and drinking left our 13\n month old son with an escalating dislike of food, and meal times in general, as well as significant developmental delays, problems with weight\n gain, limited and unco-ordinated oral motor skills, serious bouts of gagging, choking and vomiting, and every two weeks we took him back to hospital\n to have his tube replaced. This experience was always very traumatic to say the least, and set us back once again on our difficult journey to help\n Cooper eat.

\n

For Cooper to progress to eating and drinking like his peers, he required intense daily therapy in a safe and familiar environment, and a tailored\n tube weaning plan from experts in this specialised field. Unfortunately Australia has limited expertise in this field. In May last year, we embarked\n upon a huge four months of fundraising to bring an expert in this specialised field- Dr Markus Wilken, to Australia from Germany. Markus is a Clinical\n Developmental Psychologist (Owner and Director of the Institute of Paediatric Tube Management and Weaning), and he was able to single- handedly\n provide the tube weaning treatment Cooper desperately needed, which was not available to him in this country. This rapid tube wean was not easy,\n it was an incredibly exhausting and stressful two weeks for all involved, however at the end of this time, we made some amazing discoveries, and\n incredible progress, that we never had a hope of achieving without Markus by our side. We were thrilled to find that Cooper could eat and drink,\n and do both quite well, considering he had never done either in his life. He could also do both safely. Markus gave us the skills, tools, confidence,\n and knowledge, to help our son become an eater, and he gave him the gift of a more independent and normal life.

\n

At the end of the wean, unfortunately the feeding tube was still in place. Cooper was eating, and eating well, however he wasn’t drinking enough fluid\n to stay hydrated and thrive. We made the difficult decision in October to have a PEG (percutaneous endoscopic gastronomy) feeding tube placed in\n his abdomen, so the naso- gastric tube could be removed. Within twenty four hours of the new feeding tubes placement, Cooper became gravely ill,\n and we found ourselves running beside his cot on the way to theatre, signing consent forms, so our son could have emergency washout surgery. Surgery\n that would save his life. He had suffered secondary peritonitis, as the PEG leaked, and within hours of developing this condition, an incredible\n infection spread throughout his entire abdominal cavity. Cooper was taken into theatre, and we were given no indication of what the outcome would\n be, it was terrifying. How could we nearly lose our son again??! Cooper spent a month in the PICU fighting for his life, and our brave little soldier\n survived. For the next month and a half we battled a gaping hole in his abdomen, which was too big for any Mic-Key button (during the washout surgery,\n the PEG and it’s backing were ripped through his abdomen wall, essentially tearing it apart, as a PEG should not be touched for three months. The\n PEG was then replaced with a Mic- Key button, which is a low profile, much smaller feeding tube) they had, and Cooper had to then endure VAC (vacuum\n assisted closure) dressings which gave him third degree burns, silver dressings, poking, prodding, being fed by NJ (Naso- Jujenal) tube into his\n intestine…. We found ourselves in a worse situation than before we started all of this, with a little boy who had become terrified and defensive\n of everyone again, was completely battered and bruised, and who was not allowed to eat or drink anything orally for this whole length of time in\n hospital. Prior to September we had a boy who refused to eat orally, no matter how much we tried to encourage it, and now we had a boy who was\n now desperate to eat, but we had to refuse him, as his stomach was so damaged from the surgeries, it was leaking uncontrollably, so it couldn’t\n be used.

\n

Fast forward till now, and the last three months have had a damaging effect on Cooper’s eating and drinking. Every spoonful or sip is quite an ordeal,\n we have an unpredictable and unreliable feeding tube, Cooper has lost weight again, he is also very confused and angry about all that has happened…\n Understandably. He has taken an emotional and psychological battering, as have we all, and we now need the assistance of Dr Wilken again, to combat\n Cooper’s feeding issues once and for all. This time though, we will need to bring in the big guns!

\n

Markus has a speech and language pathologist that travels the world with him, to assist in the most intensive and tricky weans. Cue Stephan Echtermeyer,\n an experienced speech therapist (owner and director of Sprachpuzzle), the hands- on master, who specialises in tube weaning and Castillo Morales\n Therapy.

\n

How Can You Help?\n

\n

With your generous support and donation, you can provide Cooper with the opportunity to combat his psychological fear and anxiety towards eating and\n drinking once and for all. The money raised will be used to bring two experts in this specialised field- Dr Markus Wilken, and Dr Stephan Echtermeyer,\n to Australia from Germany. Markus and Stephen will be able to provide the life- saving, consistent and intensive tube weaning, and psychological\n treatment, Cooper desperately needs to get back on track, and look towards a tube free future. You will give our son the gift of a more comfortable,\n safe, independent and normal life, with substantially less doctor, specialist and hospital visits.

\n

For a detailed account of Cooper’s birth, the Rapid Feeding Tube Wean in September with Dr Wilken, and our previous two months in hospital after the\n PEG surgery, please visit www.facebook.com/helpcoopereat\n

\n

Thank You!

\n

", "itemId": 6401356, "name": "Cooper Greig", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/cooper-greig", "url": "/personal-fundraising-members/cooper-greig", "releaseDate": "2016-09-20T00:00:00", "releaseDate_raw": "2016-09-20T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T13:41:41.777", "lastUpdateDate_raw": "2017-02-14T13:41:41.777", "counter": 9, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/cooper-greig?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401356&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/Photo -Jan 15.jpeg", "TEMP - Old URL": "" }, { "description": "

\n

Hi, My name is Cooper. I was born on the 16/11/2011 with my identical twin brother Regan. We were born 10 weeks premature and spent the first 3 months\n of our lives in intensive care with the lovely doctors and fantastic nurses of the Mater children’s hospital in Brisbane. Mum and dad would drive\n 1 hour twice a day every day to see us until we finally came home.

\n

During Mums pregnancy it was found that we had twin to twin transfusion syndrome and mum had to have emergency laser surgery at 20 weeks to save our\n lives. This condition results in all the blood flow from the placenta going to my brother leaving me with none. Without surgery we both wouldn’t\n make it.

\n

Shortly after we were born we both decided to put the intensive care doctors and nurses to the test by crashing, Lucky they are the best in the world\n and pulled us through.

\n

After we arrived home I was diagnosed with Spastic Diplegia cerebral palsy. This means that I have a lot of trouble moving from my tummy down. I’m\n now able to partially crawl but I can’t move or climb like my brother.

\n

Why I need your donations is, I’m raising money for me to attend the Kauffman thera-suit center in the USA as this is the world leading therapy for\n cerebral palsy. I also need ongoing support for other beneficial therapies at home such as feldenkrais massage and myofascial release therapy.\n There will also be a requirement for walking frames and other specialized equipment when I’m strong enough.

\n

These therapies have caused enormous financial strain on mum and dad as there is little to no funding for cerebral palsy therapies.

\n

My goal with your donation is to be able to maintain and possibly increase my therapies and one day be able to stand up straight and tall and look\n my brother in the eye. Your support and kind donations are so greatly appreciated by me and my family and will go towards making a great difference\n in my way of life. Thanks, Cooper \":)\" \n

\n

", "itemId": 6401357, "name": "Cooper Wolff", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/cooper-wolff", "url": "/personal-fundraising-members/cooper-wolff", "releaseDate": "2016-09-20T00:00:00", "releaseDate_raw": "2016-09-20T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-10T13:53:37.733", "lastUpdateDate_raw": "2017-07-10T13:53:37.733", "counter": 10, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/cooper-wolff?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401357&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401333", "Location": "Brisbane", "Image": "/images/personal-fundraising-images/image.JPG", "TEMP - Old URL": "" }, { "description": "

\n

Hi, our names are Tammy Reed and Nathan Goodwin and we have a gorgeous 3 ½ year old son called Cruz. Cruz has a rare chromosomal disorder called 2q37\n Deletion Syndrome. This syndrome has resulted in Cruz (and our family) having to live in hospital for the first year of his life. There is only\n around 100 reported cases of this syndrome worldwide.

\n

Cruz’s two most significant issues resulting from his syndrome are that he has major Gastro Intestinal problem, and developmental delay. His gastric\n problem meant that Cruz's bowel kept twisting and he has sadly been unable to drink or eat anything orally since he was 3 weeks old. His stomach\n and bowel had not worked since birth. His time in hospital has resulted in numerous surgeries, infections, blood transfusions and many more horrible\n complications along the way with long periods of time in the Paediatric ICU. Cruz's needs are high, and always will be.

\n

His developmental delay issues means Cruz struggles to reach all of his milestones. Cruz can now sit unaided, however he cannot yet crawl, stand or\n walk. He can also roll to each side for a very short period of time. He is very behind with speech but is able to say a few words being Mumma,\n Dadda, Nanna, Bubba, Peppa, George, Elmo, Ball, Bubbles, Boo and GO!!He is also learning sign language and its been amazing being able to communicate\n with him using signs. He is a lot less frustrated now that he is able to communicate with a few words and a few signs. He can now sign for Car,\n Friend, Shopping, More, Finished, Book, Like, Good, Cat, Dog, Cow, Frog,

\n

Cruz also suffers from a genetic duplication, specifically 12q24.11 to 12q24.33, a tethered spinal cord requiring surgery within the next year; GORD\n (Gastro Oesophageal Reflux Disease) resulting in vomiting every day since birth so far; low cortisol and blood sugar levels; iron deficiency and\n anaemia; an oral aversion and feed intolerance; easily susceptible to viruses and infection; difficult to intubate and numerous failed extubations;\n breathing difficulties requiring oxygen on many occasions; high risk of line sepsis having the Port-a-cath inserted in his chest; a very high tolerance\n for opioids which means he is difficult to sedate and keep sedated and requires weaning periods, and a sleeping disorder to name a few.

\n

Cruz had life threatening bowel surgery on 20 February 2015, which so far has proved to be successful. Cruz has since been able to be fed into his\n stomach via a Mic-key button every 3 hours, and water is given through this button to keep Cruz hydrated. Cruz has also had eye lid surgery to\n correct his lazy eye and improve his vision. Cruz has 3 monthly iron infusions to help his iron levels stay stable. Tammy has not been able to\n return back to work since having Cruz, as caring for him is a 24 hour / 7 day a week job. Nathan is self-employed and, due to the expenses associated\n with giving Cruz as many opportunities as we can and access to as much therapy as is required, Nathan works six days a week with very long hours.\n Cruz has many outpatient appointments on a weekly basis, along with physiotherapy sessions, speech therapy and horse riding for the disabled. Cruz\n attends a Special Needs day care which is two hours each Tuesday and Thursday where Cruz's carer is required to stay with him to help move Cruz\n around the room and support him sitting on the chairs and play equipment. Cruz has specialised disability equipment at home such as a wheelchair\n , a walker, two supportive seats (one for feeding and one for a comfortable seat), a physio mat and a special bathing chair. Both myself and Nathan\n are sadly unable to become Australian Permanent Residents and/or Australian Citizens. We have looked in to this, and unfortunately we do not fit\n in to any of the categories in which can apply.

\n

Cruz was born in Australia, but that sadly does not make him an Australian - he is still considered a New Zealand Citizen by decent until he is 10\n years old. This has proven to be very hard for us in the way that we are not eligible for any funding from the Australian Government to help towards\n therapies or equipment for Cruz. Moving back to New Zealand is not an option for us at this time either. It is far too risky for us to move Cruz\n outside of Australia. Given Cruz’s medical and health issues to date, we have a great team of medical professionals who know Cruz well and he remains\n under their care. Additionally, Cruz’s medical advice to date is that the climate in Queensland is much better for Cruz’s health and wellbeing.\n As a result of being ineligible for any assistance, we have to pay for the therapies Cruz needs by ourselves and sadly, nothing labelled \"special\n needs\" is inexpensive.

\n

We are proud to say that Cruz is the happiest little boy and can always manage a smile no matter the circumstance. He is getting very cheeky now and\n has quite the little personality. He is so very loved, and gives us a lot of love and affection back. He is a lovely little boy who is very caring,\n he likes to share everything, he is gentle with others and I can already see what a loving boy he is becoming.

\n

Our most sincere heart felt thank you for any donation towards Cruz to help our precious boy who deserves to live life to the fullest. Any donations\n will be used towards therapies such as physiotherapy, occupational therapy, speech therapy, horse riding for the disabled and possibly music therapy\n as Cruz is developing a love for music. Thank you xxx\n
\n

\n

\n

To read further about our beautiful boy Cruz please click here. or to follow his journey please like his Facebook page Cause for Cruz.

\n

 

\n
", "itemId": 6401358, "name": "Cruz Goodwin", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/cruz-goodwin", "url": "/personal-fundraising-members/cruz-goodwin", "releaseDate": "2016-09-20T00:00:00", "releaseDate_raw": "2016-09-20T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-17T14:03:21.193", "lastUpdateDate_raw": "2017-07-17T14:03:21.193", "counter": 11, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/cruz-goodwin?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401358&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/image 14.217.jpg", "TEMP - Old URL": "" }, { "description": "

Hi, my name is Dominic & I am 9 years old. My best friend is EVO my scaly breasted lorikeet - he is my best friend because I met him in Darwin. By\n the way I sometimes like to tell big stories because I have a big sense of humour.

\n

I love playing my Xbox and iPad, watching movies, WWE wrestling (I love to practice my wrestling and have mastered my own finishing moves). I am very inquisitive\n and ask lots and lots and lots of questions about everything. I have lots of friends at school and have a very vivid imagination which allows me to\n travel many places. Recently when I went to Brisbane to visit my Nana, my cousin Nic and I went to China every day without leaving the front bedroom.\n When I was there I also taught my Nana all she ever wanted to know and more about WWE wrestling which helped her to answer a question on Millionaire\n Hot Seat one afternoon.

\n

I am in Grade 4 at Kirwan Primary school, but I love school holidays the most. When I grow up I want to go to University and build robots like in the movie\n Real Steel or maybe be a pilot. By the way I forgot to mention I have Cerebral Palsy that’s why I’m asking for help so we can buy a new car.

\n

I am not fussy but I would like a blue car with tinted windows, air conditioning (so I can travel home in summer without sweating because I live in Townsville),\n have a stereo so I can listen to Ed Sherrin who I have the same coloured hair as, a cup-holder for my Frozen Coke or Frappe, personalised number plate\n saying EVO07 and also one that I can ride in while sitting in my wheelchair.

\n

If I was ever so lucky to maybe one day have my dream car the first place I would like to go is school ha - ha just kidding. Maybe the Strand Water park\n or take EVO on a holiday down to my Nana’s place.

\n

I asked my family to write a something about me….

\n

NANA - My beautiful grandson Dominic has Cerebral Palsy. He is a bright intelligent boy who has loads of personality and in my opinion just needs the chance to reach his full potential. Please help him achieve that goal.

\n

Big Lily (Helen) and Barb - Dominic is a bright, curious and engaging boy whose horizons would be immensely broadened if he had easy transport adapted to accommodate his wheelchair. Many more chances to go and do what he'd love to do.

\n

Aunty Emma -When I saw Dominic play soccer for the first time, I was overwhelmed with emotions; pride, joy, amazement. As Dominic hopped around on his knees, then elevated himself up with his good arm/hand he somehow flicked himself around and kicked the ball with the top of his knees BOOM the ball went flying. I knew then that Dominic has no limits only the limit that people will put on him\" \n

\n

Aunty Jane & Uncle Garry – Our nephew Dominic is one very Special young man. Dom has a huge heart and lots of love to give everyone. Dom is very considerate of others before himself (he likes to make sure that his Mum is always ok). Dom has an infectious personality and you are easily drawn to him. Dom is very into wrestling & has quite a few special moves, which he loves to show us when he visits. Having CP has not limited him in his passion of wrestling.\n If anything it has shown us that Dom has no limits & will achieve great things.

\n

Ivy (17) - Dominic is one of a kind. The most amazing soul. Always happy and bringing joy to everyone. Most of all he has an\n amazing personality and deserves the best in life. He has had it rough but in the end the kid never gives up. Always putting a smile on his mother’s\n face and everyone else. 

\n

Kurtis (14) –I don’t get to see Dominic very much but I can tell you one thing he is the funniest kid I have ever met.He always makes me laugh and is the best cousin I could have asked for.

\n

Nicholas (12) – Dominic is a very funny, happy handsome and cool cousin. I love spending time with him.

\n

Thank you so much for your kindness and generosity in helping me to get some new wheels! I am forever grateful.

\n

Dominic :)  \n

\n

 

", "itemId": 6807639, "name": "Dominic Anderson", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/dominic-anderson", "url": "/personal-fundraising-members/dominic-anderson", "releaseDate": "2017-08-22T00:00:00", "releaseDate_raw": "2017-08-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-09-21T12:03:11.09", "lastUpdateDate_raw": "2017-09-21T12:03:11.09", "counter": 12, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/dominic-anderson?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6807639&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6807600", "Location": "Kelso", "Image": "/Images/fundraising photo.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Hi my name if Finlay and I’m 2 ½ years old. I was diagnosed with a genetic condition called Spinal Muscular Atrophy, commonly known as SMA when I was\n 18 months old. SMA is a rare inherited disease resulting in the loss of nerves in the spinal cord and weakness of the muscles connected with those\n nerves. The muscles most frequently affected are those of the neck and trunk that control posture, those of the leg and arm that control movement\n and those of the area of the ribs that help breathing. There is no known treatment for SMA and 1 in 35 people carry the gene.

\n

I was fortunate enough to be classified as a type3, where I have limited mobility. I fall down frequently, I struggle to get up without help, I will\n never run and will struggle to ride a bike like most children. My mummy and daddy’s aim is to keep me as mobile as possible, however SMA is a degenerative\n neuromuscular disease and I will need the aid of a wheelchair for Kindy & School. I have daily physio and weekly swimming lessons to keep the\n muscles moving and to help maintain the little core strength I have left. When at home I have Dobbie my dog to keep me active and I love spending\n as much time as possible outside helping daddy in the garden or with mummy at the play park. I am a happy and cheeky boy which my mummy will testify\n to, and I don’t like it when I can’t keep up with other kids.

\n

My parents hope to raise money to assist us in funding a Permobile wheelchair for me and a modified vehicle to help us get around. Having access to\n this equipment will allow me to keep up with my peers in the playground and to access my home environment independently. This will benefit me both\n physically and emotionally as I will be able to conserve energy to develop age appropriate skills.

\n

Mummy and Daddy say they are blessed to have such a happy boy and I am here to teach people that they should be grateful for the life they lead and\n never take it for granted. My family and I thank you for taking the time to read my story. Your support and generous donations will go a long way\n to helping me live my life to the fullest. Big hugs and kisses from Finlay xo\n

\n

If you would like to know more about my condition please contact my mummy and daddy (Lyndsey & Graeme) at cav_78@hotmail.com\n

\n

", "itemId": 6401359, "name": "Finlay Mair", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/finlay-mair", "url": "/personal-fundraising-members/finlay-mair", "releaseDate": "2016-09-20T00:00:00", "releaseDate_raw": "2016-09-20T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-11T08:55:48.947", "lastUpdateDate_raw": "2017-07-11T08:55:48.947", "counter": 13, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/finlay-mair?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401359&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/images/personal-fundraising-images/finlay-221x300.jpg", "TEMP - Old URL": "" }, { "description": "

We welcomed Francisco (Franki) Jules Moura on Mother’s day, 2016. Shortly after delivery, we were shocked to discover that he was born with several birth\n abnormalities. The most noticeable and concerning to his pediatrician and us was his Sagittal Craniosynostosis. Craniosynostosis is a birth\n defect that consists of premature fusion of 1 or more cranial sutures, resulting in an abnormal head shape. Franki’s head was long and cone shaped\n at the back and resembled that of a boat.\n

The day we took Franki home from hospital was also the day we started his medical journey. The pediatrician organized us to see a craniofacial plastic\n surgeon, who told us Franki would need to have spring assisted craniofacial surgery to open the fused suture in his skull to enable his\n brain to grow normally. Along with an extensive medical team of neurosurgeons and plastic surgeons, Franki’s craniofacial surgery was scheduled\n for when he turned 3.5 months of age.

\n

At 1 month of age, during a routine 4 week check up, it was noticed by his pediatrician that Franki had an inguinal hernia that had\n to be removed as soon as possible. Three days later, Franki was in theatre to remove this as well as have a left Orchiopexy procedure\n to correct his other Cryptorchidism birth defect.

\n

After Franki’s cranial surgery, and at about 4 months of age, Franki still hadn’t grown out of being a highly irritable baby, who cried for long periods\n at a time and slept very minimally. It was then that we sensed there was more to our beautiful blue-eyed baby boy than we had previously thought.

\n

Naturally, we were becoming increasingly concerned about his vision and delayed gross motor function and so we took Franki to a private pediatric ophthalmologist\n who told us he suspected DVM (delayed vision maturation) and we were told to wait until he was 6 months old to review. It was also at this time\n that we started taking Franki to a private physiotherapist to see if there was anything we could do to also progress Franki’s gross motor skills.

\n

After numerous pediatrician appointments, Physiotherapy appointments and ophthalmology appointments in addition to many visits to ED at PMH, Franki’s\n development was falling behind. By his sixth month, he was still not visually attentive and it became very obvious that he was not meeting his\n developmental milestones. It was also at this age that Franki was again in theatre to have his right Orchiopexy procedure to finish correction\n of his Cryptorchidism birth defect.

\n

By 7.5 months of age, a highly irritable Franki was once again admitted to PMH where we were given the diagnosis of Global Developmental Delay, by\n one of the Developmental Pediatrician’s, and were told to prepare for the real possibility of Franki having a permanent disability, and that Franki\n would be referred to get genetic testing and have an MRI after his cranial springs were due for removal. Nothing could have prepared us for that\n news…

\n

In January this year, at 8.5 months of age, Franki underwent his fourth round of surgery to remove the springs inserted during his spring assisted craniofacial surgery. 8\n weeks post surgery we were told that his Craniosynostosis treatment had been successful. We had hoped that by removing his springs, somehow his\n irritability may also cease. We were wrong.

\n

Just before Easter this year, Franki was admitted again for irritability, 24 hours without sleep, and growing concern about the reason for his GDD.\n It was here that we met the most lovely general pediatrician who listened to us and shared in our concerns. The ball started rolling and our one\n week stay at PMH allowed Franki to undergo his much awaited MRI, EEG and discussion with the Nuero team doctors. Finally, we felt like we were\n getting somewhere!

\n

Franki is now 13.5 months old, and is still genetically undiagnosed, despite ongoing genetic testing, inconspicuous MRI’s, CAT scans and inconclusive\n EEG’s. After failing to be picked up by the Early Intervention Program at PMH until just recently, Franki now receives therapy services from Wizetherapy,\n as part of his WA NDIS plan which includes combined weekly physiotherapy and occupational therapy as well as occasional speech therapy. Next term\n Franki will hopefully start hydrotherapy at PMH and it is my hope that he also attends private sessions of conductive education in the not so distant\n future.

\n

Franki is now recognized as having considerable special needs. He has been diagnosed formally with global developmental delay, Cerebral Vision Impairment,\n and mild dystonia which is still under ongoing review for possible CP. Geneticists strongly believe all of these things are large in part due to\n a rare genetic disorder that is yet to be discovered. For now, they refer it to as a syndrome without a name (SWAN). Currently, Franki is non-verbal,\n can’t push off his hands, sit, stand, or walk. He can roll over from side to side, but takes an immense amount of effort in which to do so. He\n is making remarkable improvements towards sitting unassisted and we are hopeful that he will be doing so very soon!

\n

Whilst we are thankful that Franki is receiving some assistance from WA NDIS, it is unfortunately limited and only covers what is deemed as ‘reasonable\n and necessary’, which is just over 50 hours of 1:1 contact per year which equates to about once a week. We know that the early years are the most\n formative and as such, we are hoping to be accepted for intense therapy in late 2017 and early – mid 2018 with NAPA http://www.napacenter.org,\n completing 3 hours of therapy, 5 days a week for 3 weeks, totalling 45 hours will cost just under $10,000! As Franki’s parents, we are his strongest\n advocates and strongly believe that he is capable of so much given the right opportunities in life!

\n

If you would like to join our team dubbed ‘Franki’s fighter’s’, please get in touch at frankijulesmoura@gmail.com\n

\n

No matter the size of the donation $5, $50, $500 it all counts and will go a long way to giving Franki the best opportunities in life. Donations of\n any amount are so very much appreciated with all funds going directly towards progressing his development and accessing any specialised equipment\n that he may require.

\n

From the very bottom of our hearts we thank you on behalf of Franki for all your love and support. It means everything to us all.

\n

xxx

\n

Vera & Fernando

\n

 

\n

\n
", "itemId": 6743781, "name": "Franki Jules Moura", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/franki-jules-moura", "url": "/personal-fundraising-members/franki-jules-moura", "releaseDate": "2017-07-10T00:00:00", "releaseDate_raw": "2017-07-10T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-10T13:55:26.94", "lastUpdateDate_raw": "2017-07-10T13:55:26.94", "counter": 14, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/franki-jules-moura?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6743781&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401343", "Location": "Western Australia", "Image": "/images/personal-fundraising-images/IMG_9575.jpeg", "TEMP - Old URL": "" }, { "description": "

Hi, my name is Frankie. I am eight years old and I have Autism Spectrum Disorder. My speech is still developing and I often get anxious and frustrated\n due to my inability to communicate my needs.

\n

I also get quite lonely as I do not have any younger siblings to play with. I love doing art and I spend a lot of time drawing and daydreaming.

\n

When I get restless I have the tendency to hop over my fence and run away, usually onto the busy roads. My parents are very stressed over this situation\n and we have recently purchased a puppy called Bear who we are training up so he can help with Frankie's needs. Bear is there to help in many ways relating\n to my development and most importantly keep me safe at all times so I can enjoy life!

\n

Your support and generous donations will go towards the ongoing costs of training bear and any other expenses which may arise. Your kindness is greatly\n appreciated by myself and my family and will really make a huge difference in helping me achieve my goals and keeping me safe.

\n

Thanks, Frankie

\n

 

", "itemId": 6743754, "name": "Frankie Anschutz", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/frankie-anschutz", "url": "/personal-fundraising-members/frankie-anschutz", "releaseDate": "2017-07-10T00:00:00", "releaseDate_raw": "2017-07-10T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-10T13:52:50.6", "lastUpdateDate_raw": "2017-07-10T13:52:50.6", "counter": 15, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/frankie-anschutz?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6743754&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/images/personal-fundraising-images/frankie-274x300.jpg", "TEMP - Old URL": "" }, { "description": "

Georgia is a 10-year-old shining star! She is a delightful, smiling, engaging, funny, determined, strong, and curly-haired little lady. Georgia also has\n severe cerebral palsy, which means she is unable to walk, talk, stand, sit, eat, wash, sleep, play or even go to the loo independently. She requires\n 24 / 7 care and support, 365 days of the year.\n

When Georgia was born, she arrived silent and blue, and had to be immediately resuscitated. Her APGAR score was 1 out of 10. Georgia had suffered a\n huge hypoxic injury (lack of oxygen) that had done extensive and irreversible damage to her brain, and at just 7 days old she was given the diagnosis\n of Cerebral Palsy Spastic Dystonic Quadriplegia Grade 5. The severest grade of cerebral palsy. The worst-case scenario.

\n

Georgia has come a long way since her very traumatic birth. She literally fought back from the dead, and has gallantly and gracefully fought ever since.\n Over the past decade, this little trooper has literally spent some 7000+ hours of her life doing formal therapy. You can more than double that\n number when including the home therapy programs conducted by her family and dedicated carers.

\n

Georgia is now in Year 4 at school, just one of her many achievements beyond expectation. She is a model student and success story of inclusive education.\n As well as school, she juggles during the school term, Physiotherapy, Occupational Therapy, Speech Therapy, Conductive Education, Hydrotherapy,\n Conductive Education, Feldenkrais, Botox, and Chiropractic Therapy sessions. Every school holidays Georgia spends another 60-70 hours at the NAPA\n Centre, a world leader of paediatric rehabilitation therapy, doing their specialised Intensive therapy programs. And then there are the regular\n hospital check-ups and medical appointments…

\n

Every formal therapy session over the 10 years has averaged at $150 per session. Her equipment costs are astronomical ($17,500 for her manual wheelchair\n for example). You do the maths! Disability comes with an enormous price tag sadly.

\n

The good news is that all this therapy is working!

\n

Because of her 700+ hours of therapy a year, Georgia is super healthy and strong. She is almost sitting by herself on the floor. She is sitting much\n more comfortably in her wheelchair. She is taking steps in her walker. She is assisting with transfers and weight-bearing. The therapy is managing\n her pain, and has delayed what experts believe are inevitable medical interventions, like hip surgery. It has helped keep her well and out of hospital.

\n

Regular therapy is also helping Georgia strive towards a major goal of communication. She is slowly and surely learning the use of her communication\n system, accessing it through a head switch. Through this she will ultimately be able to tell the world what she really wants, feels, and and knows.\n She will be able to ask questions. She will be able to really learn, and ultimately be a contributing member of her community.

\n

Georgia has achieved more than any expert had anticipated and this inspirational little girl has broken the barriers of common expectation of a child\n with Grade 5 cerebral palsy. Georgia is seeking, and needing, your generous support to continue her positive journey and to challenging expectations.

\n

Your support will help Georgia make a difference to the world.\n

\n

Georgia will primarily devote your support towards her many therapies, which will continue to enable her to make breakthroughs beyond expectation.\n Conquering the skill of direct communication is Georgia’s immediate goal.

\n

While focusing on Georgia’s therapy, her other 24 / 7 needs will always remain, so your generosity may also, in part, help provide for her specialised\n equipment, medical requirements or care, respite and caring assistance.

\n

Over the past 10 years, Georgia has developed such a strength, resilience, calmness and happiness. She is wiser than most of us will ever be. She is\n definitely the most patient. She brings a warmth and gentleness to the world. Her smile and laugh is incredibly genuine and powerful. She can light\n up a room and she makes friends wherever she goes. Georgia is acutely observant and aware of her world and everyone in it. She makes her choices,\n loves chocolate, and has a wicked sense of humour. She is an awesome big sister. She is a much-loved member of her classroom and whole school community.\n She is her family’s shining light.

\n

Georgia has helped her family and those she meets see the world through very different eyes. She tests the system and she is breaking down barriers.\n She brings awareness to the world that it is not an equal place. Georgia is, and will continue to, make a difference in the world.

\n

10 years is a long time, and the next 10 years will be crucial for Georgia to continue to grow and advance. We’d love you to be part of her cheer squad.

\n

We truly thank you for your support, and GoGeorgiaGo!!!!\n

\n

 

\n

\n
", "itemId": 6743777, "name": "Georgia Conn", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/georgia-conn", "url": "/personal-fundraising-members/georgia-conn", "releaseDate": "2017-07-10T00:00:00", "releaseDate_raw": "2017-07-10T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-10T13:52:13.62", "lastUpdateDate_raw": "2017-07-10T13:52:13.62", "counter": 16, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/georgia-conn?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6743777&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6743772", "Location": "Ingleside", "Image": "/images/personal-fundraising-images/Georgia 1.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Hi, I am Georgia, a fun loving 16year old girl diagnosed with Williams Syndrome. Williams Syndrome is a genetic condition, present at birth which has\n also lead to cardiovascular issues, including open heart surgery at the age of four and has also greatly affected my intellectual development.\n Recently, I have been diagnosed with epilepsy which means many more hospital admissions.

\n

It has been a rough 16 years and I have been faced with many challenges including numerous tests and hospital stays however, I have always remained\n happy and kept my fun loving sense of humour.

\n

As I am nearing the end of school our main focus is to raise funds for my Post School Options and for future lifestyle planning. Other monies raised\n along the way will be used also for respite fees, tutoring, other equipment as needs arise and also therapies – such as physio and OT and hopefully\n also music therapy!

\n

The past 18 months have been a long road as I have been dealing with an increase in my seizure activity, which meant a lot of hospital stays for me\n and also mum/dad plus been away from my siblings and also school.\n
Your support and kind donations will make a huge difference to my quality of life and is greatly appreciated by me and my family. Thank you, Georgia \":)\" \n

\n

", "itemId": 6401361, "name": "Georgia Solway", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/georgia-solway", "url": "/personal-fundraising-members/georgia-solway", "releaseDate": "2016-09-20T00:00:00", "releaseDate_raw": "2016-09-20T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-09-21T12:54:30.073", "lastUpdateDate_raw": "2017-09-21T12:54:30.073", "counter": 17, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/georgia-solway?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401361&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401337", "Location": "Redland Bay", "Image": "/images/personal-fundraising-images/Fundraising image solway.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Hi I am Jack, a happy, bubbly 10-year-old boy just full of life!

\n

I was born at 31 weeks, weighing only 1750grams and had to spend the first 6 weeks of my life in the special care unit, the doctors told mum I was\n doing well and could go home at 37 weeks’ gestation.

\n

Growing up, I was very slow developing so at 18 months old I had an MRI done and soon after was diagnosed with Cerebral Palsy. From then on I was doing\n Physio, Occupational therapy and Speech therapy 5 times per week. I also began special needs swimming lessons and specialised horse riding at Riding\n for the Disabled to help with my spasticity. Still to this day I have to attend hospital on a regular basis to get Botox injections in my leg and\n wear special orthotics to help with my spasticity. I live with my mum and two sisters and I am very lucky that my mum does everything herself to\n ensure I get the best care and taken to my many appointments.

\n

Next year is a big year for me as I will be graduating from primary school, I am very excited and looking forward to the next adventure in my life.\n In the last year of primary school, the grade takes an end of year trip to Canberra, however due to my disability I am unable to travel the same\n way as my classmates by bus. This trip is just as important to me as it is to the rest of the class and my mum is trying to raise money so that\n myself and a carer can travel to Canberra by plane and meet the class there so I have the same opportunity to participate in this end of year trip\n with my friends!

\n

Your support and kindness in helping to make this trip a reality is so greatly appreciated by me and my family and we will be forever thankful. From\n the bottom of my heart, Thank you!

\n

Petra & Jack

\n

", "itemId": 6744603, "name": "Jack Geitl", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/jack-geitl", "url": "/personal-fundraising-members/jack-geitl", "releaseDate": "2017-07-11T00:00:00", "releaseDate_raw": "2017-07-11T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-11T09:05:54.493", "lastUpdateDate_raw": "2017-07-11T09:05:54.493", "counter": 18, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/jack-geitl?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6744603&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/Images/personal-fundraising-images/wpid2835-Jack_125963_01.jpg", "TEMP - Old URL": "" }, { "description": "

\n

My name is Jeremias Blackman and I live on the Gold Coast. In September, 2010 I was involved in a motor vehicle accident resulting in a severe spinal\n cord injury. I have undergone spinal surgery in Brisbane and am currently on the long road to recovery. My injury is classified as L2 incomplete\n paraplegia which means I use a wheelchair as my main source of mobility.

\n

Since my accident, I have suffered chronic back pain and chronic neuropathic pain in my legs; as surgery was unable correct my injuries.

\n

Prior to my accident, I was a university student and pursuing a professional rugby league career. I initially lived in Cairns with my family who undertook\n the role of carers. Due to Government Health Funding cuts in 2013 I was forced to relocate to the Gold Coast to attend treatment by a private exercise\n physiologist and family friend who generously gave up his time to assist me with physiotherapy. I was unable to receive any compensation or disability\n payouts for my accident due to being ineligible. As I was no longer eligible for the public health system, all of my recovery and rehabilitation\n has been through the help of family and friends.

\n

I am now fundraising to continue to attend an intensive ongoing rehabilitation program with Ken Ware, at the Neurophysics Institute at Robina on the\n Gold Coast. This rehabilitation program is a recognised Australian, International rehabilitation centre that is successful in treating professional\n athletes and sporting injuries as well as spinal cord injuries and other complex function recovery issues. A notable case is the success of John\n MacLean – T2 incomplete Paraplegic to come out of his wheelchair and now he is able to walk. John was filmed by the 60 Minutes Program and was\n walking completely unaided (independently) after being wheelchair bound for 25 years.

\n

The cost of this rehabilitation program is to allow me to attend ongoing therapy. Other expenses that may occur for this rehabilitation will be transport\n costs of my current car – maintenance and fuel to attend the rehabilitation centre frequently in my small Toyota hatch to transport my wheelchair\n which is essential for my mobility.

\n

This rehabilitation program is designed to assist me to eliminate chronic pain, assist my daily health and wellbeing and aid my recovery and achieve\n my goal of coming out of the wheelchair and to walk independently. I would like to sincerely thank everyone who has generously donated and supported\n me in my endeavour to walk again.\n
\n

\n

Your support and generous donations are greatly appreciated and your help has and will make a huge difference in my quality of life. My heartfelt thanks\n is not really enough words to say thank you for your much needed help and support.

\n

Thank you, Jeremias

\n
\n

", "itemId": 6401364, "name": "Jeremias Blackman", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/jeremias-blackman", "url": "/personal-fundraising-members/jeremias-blackman", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-11T09:07:43.163", "lastUpdateDate_raw": "2017-07-11T09:07:43.163", "counter": 19, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/jeremias-blackman?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401364&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/update8.6.png", "TEMP - Old URL": "" }, { "description": "

\n

Our son Jett was born in September 2009. He was a very quiet baby and slept a lot. We thought we were blessed with the ‘perfect’ child but from around\n 4 months we were concerned as he didn’t smile, babble or give us any eye contact. We continued on, but grew further concerned as Jett was not reaching\n ‘normal’ milestones. His muscle tone was so low that he was floppy and needed to be supported up until age 1. Jett never smiled, laughed or responded\n to his name. He was also suffering from constant ear infections and had his first grommet surgery at 14 months old.

\n

We took Jett to the specialist and were advised he was just a typical boy and a little bit slower but as time went on we knew in our hearts that he\n was different. Jett would bite himself and others. He would scream and arch his back in frustration. He didn’t like loud noises or vibrations.\n He didn’t seem to feel heat or pain like I did. He constantly drooled and didn’t speak. We started occupational, physio, music and speech therapy\n when he was 15 months old.

\n

Fast forward a couple of years and Jett has been diagnosed with ASD (Autism Spectrum Disorder) He has improved so much from all of the hard work we\n have put in by doing daily therapy with Jett at home and with professionals. At 3 and a half, Jett has finally started to use words, he is walking\n and he uses eye contact and to top it off he smiles!

\n

He still has quite a long way to go. He has been assessed as being half his age mentally. Jett has been having seizures which we are currently investigating\n through EEG’s and a neurologist. He still uses nappies and can’t feed himself with utensils, But with the early intervention program we have set\n up our goal is to prepare him to start a mainstream primary school in 2015.

\n

Jett has a sensory processing disorder, PICA, global developmental delay, Seizures, Constant ear infections, anxiety, speech problems and behavior\n issues. We are fortunate enough to have Jett enrolled at AEIOU (Autism Early Intervention Outcome Unit) All funds raised will cover Jett’s fees,\n which are $47,000 per year before government and centre and leaves us $27,000 out of pocket

\n

We hope to raise money to put towards his occupational therapy and speech therapy as they are our main concern at this stage.

\n

You can follow Jett’s Journey on his facebook page https://www.facebook.com/#!/JettiSpaghetti \n

\n

We can see that Jett will reach his goals if he continues to get the support he needs. So if anyone can put some money towards Jetts therapy funding\n we would appreciate it immensely with sugar and cherries on top!!! Thank you.

\n

Love Julia, Daniel, Sienna and Jett xxxx

\n

", "itemId": 6401365, "name": "Jett Nixon", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/jett-nixon", "url": "/personal-fundraising-members/jett-nixon", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T14:12:41.08", "lastUpdateDate_raw": "2017-02-14T14:12:41.08", "counter": 20, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/jett-nixon?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401365&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/Jett photo feb15.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Welcome to Jorge from Jimboomba’s Sunshine Butterflies fundraising page! Jorge is a beautiful little boy with a gentle and loving soul, who touches\n everyone he meets. Jorge is 11 years old and faces more challenges than most, yet he does it all with a smile.

\n

Jorge has multiple and complex disabilities including; severe drug resistant epilepsy-that we treat using a modified ketogenic diet, intellectual impairment,\n ASD, global developmental delay, non verbal and incontinence. Every day living for Jorge presents obstacles, frustrations and physical difficulties\n for him to overcome. He suffers regular injuries from being unsteady on his feet and from the seizures he endures. He requires constant supervision\n because he is unaware of his own safety and/or mortality.

\n

We know Jorge will depend on us, his parents, to care for him and to attend to all his activities of daily living for the rest of his life. Because\n of the complex nature of Jorges needs we recently decided to sell our home and build a specially modified one to accommodate these needs now and\n into Jorges adulthood. We want nothing more than for Jorge to spend his vulnerable life in an environment that is safe, appropriate and tailored\n to suit his specific emotional and physical requirements.

\n

This process of building a modified special needs home is very expensive and it has incurred additional costs of between $80k to $100k to all of the\n quotes we’ve had done. It’s a huge amount to come up with for our family, but it’s a challenge we won’t back down from. We WILL make this happen!!!!\n We all deserve the right to raise Jorge in his own home surrounded by people who care for and love him. We refuse to relinquish his care and burden\n the already overstretched disability support system, to do a job that we could do so easily ourselves, in the right environment.

\n

We have been unable to access funding to help with the additional costs of our build, so we are turning to you, our community, for help. Do you think\n you could help us achieve this dream? Do you know anyone else who would support us in this goal? Do you want to be a part of something absolutely\n life changing for a child who deserves a wonderful life? Would you like to help us give Jorge the best life possible?

\n

If you’d like to know more about Jorge please visit and join his Facebook page “Jimboomba Jorge”. Additionally you can keep up to date with the progress\n of the build once it begins and learn about all the wonderful ways we will be enriching his life through the support you so generously give.

\n

Please help Jorge if you can and know that you will be making a difference in very special child’s life. Any donations received will go directly towards\n supporting the modifications for the build and supports specific to Jorges ongoing care.

\n

Bless you and many thanks!

\n

", "itemId": 6401367, "name": "Jorge Welch", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/jorge-welch", "url": "/personal-fundraising-members/jorge-welch", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T14:13:09.37", "lastUpdateDate_raw": "2017-02-14T14:13:09.37", "counter": 21, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/jorge-welch?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401367&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401336", "Location": "Jimboomba", "Image": "/images/personal-fundraising-images/pic 2.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Joshua Elliot Mitchell, known to everyone as Joshy. Joshy, 16, has multiple disabilities - Down syndrome, Autism, Hearing impairment needing hearing\n conductors, Vision impairment requiring glasses, Congenital Heart Disease, Degenerative Lung Disease and Pulmonary Hypertension meaning he needs\n extra oxygen supplies, and Hirschsprung's Disease, he has an Ileostomy. He has Epilepsy (Atonic seizures). He struggles with immense pain in his\n neck with Kyphosis and Atlantal Axial Instability He has Obstructive Sleep Apnoea, requiring him to wear a VPAP machine to sleep. He has a lot\n of trouble swallowing, and stopped eating due to pain, so he has a PEG through which he is primarily fed. He struggles every day with immense pain\n due to a Septic infection that almost killed him in 2014.

\n

The damage to Joshy's internal organs is so extensive, it cannot be fixed. His organs are slowly deteriorating. Every time he gets sick, it is life\n threatening.

\n

Joshy was born 7 weeks premature. He spends a lot of time in hospital and has had many operations, the first one being when he was just 3 days old.\n He has had 54 operations. From his very first ultrasound they never expected him to survive another 2 weeks, let alone to be born, and then live!

\n

He has a spirit determined to live and to see the beauty in every day. Joshy is a generous, genuine, loving, caring boy. He is open and honest and\n welcoming to each and every person he meets.

\n

He has been homeschooled, can read and add up. He loves to go horse riding and spend time with his pets. He loves motorbikes. He loves going to Church\n and serving as an altar boy. His most favourite thing to do is to see bands perform live.

\n

Since an infant we have run courses in schools, businesses, churches, and hospitals, teaching them about disabilities, with Joshy being instrumental\n in the classes and practicals. We have run program's giving work experience to senior students for years with Joshy helping them learn how to understand\n disabilities. He helped in the Playgroup we ran for 10 years. He has been involved in teaching doctors about disabilities for 16 years. Joshy has\n been on the floats in the parade every year, started the Disability Action Week poker run every year, contributed art in local exhibitions (winning\n awards), been in a documentary about living with disabilities, featured in many ad campaigns and calendars for awareness raising for disabilities,\n Ronald McDonald charities and the Australian Koala Foundation.

\n

When out raising awareness, he is right beside me, shaking hands, introducing himself and promoting our cause. He has completed the ms readathon 10\n years in a row. He has volunteered with me at the local institution for the last 12 years supporting adults with disabilities. He cares for he\n the injured wildlife we rescue. He brothers the foster children we support. He is a hardworking roadie at all our concerts we organise for charity.

\n

Through the way he lives his life, and shares it with me, you and the rest of the world, he is breaking down barriers and stereotypes everywhere he\n goes. He is instrumental in our advocacy work. He has been the inspiration behind articles I have written in a number of disability and other magazines\n and many of the projects I do.

\n

Although he spends a lot of time in hospital or being bed ridden, when he is well enough, he is out there, being a part of the community and sharing\n his love and life.

\n

Thank you joining us along this journey xx\n
\n

\n

\n
", "itemId": 6401368, "name": "Joshua Mitchell", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/joshua-mitchell", "url": "/personal-fundraising-members/joshua-mitchell", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-21T12:29:55.377", "lastUpdateDate_raw": "2017-02-21T12:29:55.377", "counter": 22, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/joshua-mitchell?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401368&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401340", "Location": "Toowoomba", "Image": "/josh mirchell (1).jpg", "TEMP - Old URL": "" }, { "description": "

\n

Hello, my name is Kaid and I am almost 5 years old. When I was 8 months old my mummy was worried because I couldn’t do the things that babies my age\n could, sit up, crawl, or even hold my head up well. The doctors ran some tests and mummy was told that I have two rare chromosome disorders. They\n are called 18q23 Deletion Syndrome and 22q13 Duplication Syndrome. These cause me to have Global Development Delay, meaning I am developmentally\n delayed in all areas and always will be. At 5 years old, I am currently developmentally that of an 18 month old. I am still unable to walk and\n my communication is limited.

\n

I also have absence/vacancy seizures and myoclonic spasms in my muscles. These spasms cause me to wake all through the night and never get into the\n deep realm of sleep. This effects me in many ways too as I am not getting a good nights sleep. Along with this I am also severely deaf in my left\n ear and partially deaf in my right ear. I wear special boots which are called AFO’s with SMO’s inside of them, which help to straighten my legs\n and turn my feet the right way. They are a big help when I’m in my special standing frame or trying to practice in my walker or when I’m standing\n up to the furniture, which I have just started to do recently!!

\n

In late 2012, I was put to sleep while they did an MRI. After this, mummy was told that I have a degenerative neurological disorder called Pelizaeus\n Merzbacher Disease, which is a Leukodystrophy. This means that my brain has very little Myelin, which is supposed to help all of the messages go\n from the brain to the parts of my body. Basically a lot of my messages take a very long time to get where they’re going and sometimes they are\n lost altogether.

\n

Most recently my behavior has changed a lot, and this has both my mummy and specialists worried because I have always been a very happy, placid child,\n never upset and never cross. Now though, I find myself getting very angry and lashing out at those around me for no reason, or no reason I can\n communicate! I have terrible mood swings that my pediatrician calls manic, meaning I am hyperactive to the fullest extent one moment and at any\n moment will suddenly be very upset, quiet or vacant. Even if I knew why I do this, I am unable to communicate to tell anyone \":(\"

\n

My mummy has had to take me to see my pediatrician privately ad he wants us to urgently start seeing a private pediatric neurologist as well as a private\n pediatric psychiatrist. He wants to make sure I’m not having any other forms of seizure activity on top of what I already have, as well as find\n out if I maybe do have some type of manic disorder ie. bipolar disorder, schizophrenia or something similar.

\n

My mummy’s work is taking care of me, so she is unable to afford all of these private doctors but she knows I need them so she will do whatever it\n takes to make sure I do! We are trying to fundraise to assist in covering the costs of these appointments and medications which I will be required\n to take as its all going to add up very quickly.

\n

We would really appreciate any donations that would help us, large or small we know every single dollar helps & will make a huge difference in\n our lives.

\n

I also have my very own Facebook page where mummy shares photos of me, my progress and my journey with rare disease, I would love it if you came to\n say hello. It is called Kaid’s Krusaide. Mummy is currently trying to get an online auction going on my Facebook page too, so if anyone would prefer\n to help out in that way, rather than money, we really need items and/or services/vouchers etc that we could auction off, big or small it all helps!\n Mummy welcomes any questions you might have, so please email her if you have any at kaidskrusaide@y7mail.com\n

\n

Many hugs and thanks, Kaid (and mummy of course, Samara Newland)

\n

", "itemId": 6401369, "name": "Kaid Nutton", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/kaid-nutton", "url": "/personal-fundraising-members/kaid-nutton", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-21T14:02:30.877", "lastUpdateDate_raw": "2017-02-21T14:02:30.877", "counter": 23, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/kaid-nutton?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401369&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/kaid nutton.jpg", "TEMP - Old URL": "" }, { "description": "

Lara was born on the 5th of November 2008. The fourth child of Mark and Madonna. She was different to her siblings. She looked different…she had\n twisted feet….she didn’t cry like the other babies. She didn’t move like them either. However, after a week in the nicu we were released to\n go home, with a paediatrician’s words ringing in our heads “She may or may not be normal, depending of if she does or does not reach developmental\n milestones.”

\n

Lara was our unexpected blessing. There was only 20 months between her and Alexandra. So you can imagine life was busy! We had just moved to Brisbane,\n Katelin was in grade one…Tom was at Kindy and then there was a toddler and a baby at home. I knew that something wasn’t right…but…what\n Mother (or Father) want to think that their child is anything but perfect? We struggled on with a child that didn’t eat well. Didn’t sleep well. Wasn’t\n like any newborn we’d had before.

\n

At 6 weeks we were re-admitted to hospital for “failure to thrive”. Lara had lost weight and wasn’t feeding well. This started the game I affectionately\n refer to as “ologist bingo”. We saw many specialists for her issues….and yet none could give us any answers. The MRI showed a normal (but small)\n brain. The genetic testing showed no trans-locations or deletions. Finally at around five months we were given the diagnosis of Cerebral Palsy. Lara\n also has microcephaly, epilepsy and vision impairment.

\n

This year sees us trying to raise much needed funds to help support Lara's everyday needs. Money raised on this fundraising page will help ease the financial\n pressure of  specialised equipment, home modifications, ongoing therapies and any other costs for Lara which come up. We appreciate your help\n in getting us there. x.

\n

 

", "itemId": 6401370, "name": "Lara Dunn", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/lara-dunn", "url": "/personal-fundraising-members/lara-dunn", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T14:21:51.367", "lastUpdateDate_raw": "2017-02-14T14:21:51.367", "counter": 24, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/lara-dunn?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401370&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401333", "Location": "Brisbane", "Image": "/images/personal-fundraising-images/Lara1.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Two days before Christmas in 2015, twins Pearl and Louie Hayward were born amongst tinsel and fruit mince pies and celebration. The perfect, tiny babies\n were 2 kg each and healthy and strong. They were the first children to James and Andrea, life was good!

\n

However at just 10 days old, Pearl and Louie both contracted a nasty virus and stopped breathing, they had to be resuscitated and were placed side\n by side in ICU. Their swollen bodies were reliant on life support machines and medications. After a few days Pearl started to show signs of improvement,\n however Louie did not. The virus was cruel, and had infected his brain and every organ in his body. He was given only 12 hours to live.

\n

Louie is a battler and he made it through those 12 harrowing hours, however his brain was severely injured. The vision part of the brain was badly\n affected, and Louie is now blind. The motor movement part of the brain was also severely affected, and Louie cannot yet sit, roll or crawl. This\n also affects the development of eating and drinking skills, and Louie is now fed through a tube in his stomach. The injury to his brain has also\n caused epilepsy and microcephaly, meaning ‘small head’ as it is brain growth that causes a babies head to expand as they get older.

\n

Louie’s needs are great, but his God is greater. He is a blessing to everyone who meets him- he gives A+ cuddles and loves reading braille books, listening\n to music and a good tickle fest. He loves swimming at the beach, playing on swings and slippery slides, patting dogs and has a most infectious\n giggle!! Pearl is now reaching normal milestones and is (mostly) a caring and kind sister.

\n

Louie requires intensive therapies to develop his skills- this means many sessions of physio, occupational therapy, speech/ communication and feeding\n therapies each week. At an average cost of $170 per session, the family have long since run out of funding provided by the government and are now\n self funding Louie’s needs. Each new term of therapy brings new decisions about how to prioritise resources for Louie. He benefits from all of\n the therapy he receives, and yet the family have to decide which can be budgeted for and which will have to miss out. Upcoming expenses for Louie\n include a junior wheelchair, a walker and hand splints. This fundraising page has been set up to help ease the financial pressure and assist the\n family to cover all of these costs which Louie requires.

\n

Your kindness and support means the world to Louie and his family and they are beyond grateful for your generosity in helping Louie receive the therapy\n and equipment he needs to reach his full potential. Thank you!

\n

", "itemId": 6744608, "name": "Louie Hayward", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/louie-hayward", "url": "/personal-fundraising-members/louie-hayward", "releaseDate": "2017-07-11T00:00:00", "releaseDate_raw": "2017-07-11T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-10-11T11:31:10.26", "lastUpdateDate_raw": "2017-10-11T11:31:10.26", "counter": 25, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/louie-hayward?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6744608&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/Louie Hayward.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Marayke Jonkers, 33, is a retired Paralympic medal winning swimmer, paratriathlete and founder of Sporting Dreams, a grants program which helps athletes\n with disabilities. Unfortunately after 20 years as an elite athlete Marayke has been diagnosed with an overuse injury to her arms and now not only\n lives in extreme pain but requires a modified van to drive while still in her motorised wheelchair, as she is unable to propel a manual wheelchair\n and transport it in her current vehicle.

\n

Imagine going from being so strong you can lift your body weight with one hand to being so weak you drop a piece of toast, and not only that being\n forced to stay at home because you cannot afford a suitable mode of transportation.

\n

Imagine if every time you went to work you became bedridden in agony for up to a month because you had to use inappropriate transport – this is a reality\n for Marayke now as when she travels to every motivational speaking job she is required to go in a car or maxi taxi and causes her extreme discomfort.

\n

Yet Marayke remains motivated to continue working and contributing to the community. She has overcome so many obstacles through the thoracic outlet\n syndrome including an inability to type or use the mouse by now using voice dictation to control her computer so that she can continue her role\n as a motivational speaker, sharing her journey to becoming a Paralympian in the hope it inspires others to chase their dreams.

\n

Your support and kind donations are greatly appreciated and will make a huge difference in Marayke’s life and what she can continue to achieve. Thank\n You!

\n

To read Marayke’s story further please view here.\n

\n

", "itemId": 6401371, "name": "Marayke Jonkers", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/marayke-jonkers", "url": "/personal-fundraising-members/marayke-jonkers", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-21T12:24:54.733", "lastUpdateDate_raw": "2017-02-21T12:24:54.733", "counter": 26, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/marayke-jonkers?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401371&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/Marayke JJ.jpg", "TEMP - Old URL": "" }, { "description": "

\n

7 year old McKenzie loves life, she loves going to school, loves swimming, music, watching her sister play netball, going to the movies, surfing, shopping\n and just being around her family and friends.

\n

McKenzie also battles a rare movement disorder that doctors have been unable to explain. The involuntary movements of her body make daily life a challenge\n and her condition means McKenzie’s needs are extremely high and very expensive. She became life-threateningly unwell in Dec 2013 (developing Status\n Dystonicus) and in September 2014, after being in so much pain and so heavily medicated she couldn’t function, McKenzie underwent Deep Brain Surgery\n (Deep Brain Stimulation).

\n

Amongst the medical fraternity, her surgery was very risky and groundbreaking: she is the youngest patient in Australia to have had this surgery and\n the youngest in the world to have the particular brand of stimulator. But as her mum Sheryl explains, the risk of the surgery has been more than\n worth it – it has changed McKenzie’s life: “From the moment she woke up our lives changed. Far more than I could have ever expected. From a child\n moving violently and constantly to being able to lie still without anything moving. She has never had control of her movement and can now purposely\n move her legs or arms and do things on command. She is working very hard on head control, fine motor skills, gross motor skills, and is trying\n to communicate through verbal vocalization. My little girl is free from being trapped in her body. She is living the life”.

\n

But McKenzie’s fight isn’t over. Medication and therapy costs alone are extremely high and her family self-funds everything. Her family want to get\n her communicating and to gain some independence. She understands everything that is going on and has the most awesome personality (a real cheeky\n chops!). She speaks a thousand words with her beautiful eyes and facial expressions.

\n

Our dream is to help McKenzie communicate and tell her mum how much she loves her. This means helping contribute to her ongoing therapy (and other)\n costs.

\n

“She is the greatest gift; she has taught me what’s important in life. She is a blessing to this world and I couldn’t be more proud of her and the strength and courage she has shown through all the challenges she has faced. One strong little soul” – Sheryl, McKenzie’s mum.

\n

If you would like to know more about McKenzie and her story please visit her Facebook page McKenzie Tamala Support Group.\n Thank You for making a little girls life just that much brighter and helping to give her all the opportunities she deserves.

\n

", "itemId": 6401372, "name": "McKenzie Tamala", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/mckenzie-tamala", "url": "/personal-fundraising-members/mckenzie-tamala", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-15T09:57:01.363", "lastUpdateDate_raw": "2017-02-15T09:57:01.363", "counter": 27, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/mckenzie-tamala?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401372&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/pic 18.8.15.PNG", "TEMP - Old URL": "" }, { "description": "

Hello, my name is Nina and I have Autistic Spectrum Disorder (ASD). Associated with this, I have severe anxiety. ASD and anxiety together impair my social\n and emotional abilities to the point that I isolate myself; I cannot leave the house without being accompanied by another person. When out in public,\n I am constantly fearful of everyone, I cannot even drive my car or buy something from the supermarket without fear and nervousness taking over and\n controlling my mind and body.\n

I am 18 years old and spend most of my life in my bedroom – it is the only place where I feel completely safe.

\n

I do not want this anxiety within me to forever prevent me from leaving the boundaries of my house; to forever have control over my actions. I have\n recently met someone very special who can help decrease the level of anxiety I feel and encourage me to go out in public with an increase in confidence.

\n

His name is Claude, he is a Golden Retriever dog who has been trained by the Australian Companion and Assistance Dogs (ACAD). Claude is going to be\n my companion at all times and help me to become independent. He will accompany me to public places and when I become anxious, he will be able to\n recognise this and distract me and comfort me.

\n

I am trying to raise $12,000 to pay for Claude and further money for the upkeep of him and his training. Your support will be much appreciated. Claude\n will change my life and I look forward to exploring a whole new world with him.

\n

Thank you for your time in reading this, Nina

\n

If you would like to know more about Nina and Claude’s story, please visit

\n

https://www.facebook.com/fundsforclaude\n

\n

Noosa Triathlon 2017 Fundraiser

\n

Hello, I am Micheala, Nina’s mum. My husband Justin and I are going to enter the Noosa Triathlon 2017 as a team to help fundraise for Claude. I am\n going to swim 1500m and cycle 40km and Justin is doing the 10km run. We think we are crazy as we have never done anything like this before, but\n training has started! We have entered so there is no going back. If you would like to support us in our journey to raise funds for Claude then\n please donate to this page and encourage us in our difficult and crazy training to support Nina and Claude.

\n

For more information about assistance dogs, please visit:

\n

www.qld.gov.au/disability/out-and-about/ghad/\n

\n

www.facebook.com/AustralianCompanionAssistanceDogs/

\n

 

\n

\n
", "itemId": 6743784, "name": "Nina King", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/nina-king", "url": "/personal-fundraising-members/nina-king", "releaseDate": "2017-07-10T00:00:00", "releaseDate_raw": "2017-07-10T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-11T09:43:20.607", "lastUpdateDate_raw": "2017-07-11T09:43:20.607", "counter": 28, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/nina-king?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6743784&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/images/personal-fundraising-images/Nina and Claude.jpg", "TEMP - Old URL": "" }, { "description": "

Hi, my name is Nolan and I’m 4 years old. I was born 3.5 months premature and got very sick after I was born. My brain suffered from oxygen starvation,\n which left me with a long term diagnosis of spastic quadriplegic cerebral palsy.\n

To give me the best chance of an independent life, my parents have engaged me in regular therapy since I’ve been 1 year old. Because of that I’m now\n starting to form sentences, can chew up almost all kinds of food and know when I have to go to the toilet. I also have learned how to hold my head\n straight, roll over and pull myself along the floor. When I’m supported I love taking steps as well but my body has to get much stronger before\n I can take a couple of steps independently. For that reason my parents are currently raising money for a 4 week intensive physiotherapy called\n ‘TheraSuit’. This therapy works on building up muscles and pathways in my brain.

\n

In preparation for school I have done lots of wheelchair driving lessons in the last couple of months. I love the independence a wheelchair gives me\n as I don’t have to wait for my parents to push or carry me where I want to go. To buy a wheelchair is too expensive for my parents and that is\n why we are hoping for your help.

\n

My dad has to go to work each day but my mum has put her career on hold to provide full time care and therapy for me. This makes it nearly impossible\n for us to save up the cost for all my treatments and that’s why we are asking for your help to raise the funds.

\n

YOUR DONATION will make more of a difference than you could possibly imagine and our gratitude has no end. To follow my progress and/or to contact\n me and my family please like my personal Facebook page:

\n

https://www.facebook.com/nolanwillwalk \n

\n

For further insight and an understanding on my journey please watch this Youtube video - Nolan’s Journey Towards Independency – Sept 2015\n

\n

Thank you!

\n

", "itemId": 6401373, "name": "Nolan Rooms", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/nolan-rooms", "url": "/personal-fundraising-members/nolan-rooms", "releaseDate": "2016-08-30T00:00:00", "releaseDate_raw": "2016-08-30T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-15T09:58:31.613", "lastUpdateDate_raw": "2017-02-15T09:58:31.613", "counter": 29, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/nolan-rooms?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401373&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401341", "Location": "Townsville", "Image": "/images/personal-fundraising-images/13654334_1060733820642469_192554805606686915_n.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Our Backyard is a 5 acre learning ,education and recreational facility in the Noosa Countryside that provides life skills, recreation and learning\n opportunities to young people of all ages and abilities.

\n

Located at 468 McKinnon Drive Cooroibah and 5 minutes from Tewantin/Noosa, Our Backyard brings everyone together in one accessible place to deliver\n all of our programs and services.

\n

Our Backyard is a Hobby Farm which is home to numerous farm animals that include; Cows, Goats, Sheep, Donkey, Ducks, Chickens, Geese, Guinea Fowls,\n Peacock and a Miniature Horse, who all share the paddock and stable yards. These farm animals have made Our Backyard their home and help us deliver\n animal therapy and animal care programs to individuals living with disability.

\n

Our Backyard is located in a beautiful Australian bush setting with plenty of garden beds filled with herbs, salad, veggies, a variety of fruit trees,\n and an assortment of native shrubs and trees which we all care for.

\n

Our Backyard has plenty of facilities for everyone to enjoy, including, Our Backyard Outdoor Learning Kitchen, A Learning and Recreation Centre, an\n Adventure Playground, an Accessible Tree House, An Early Intervention Facility, A Respite House, An Accessible Pool and beautifully landscaped\n gardens and dams. Plans for the future include a kitchen / cafe called “The Farm Pantry\" that will offer employment opportunities for our disabled\n members and provide a peaceful environment for the community to enjoy. Our Backyard will also be a place for kids to enjoy farm themed birthday\n parties and will also be available to school groups to experience Farm Culture.

\n

Making a donation towards Our Backyard assists us with maintaining the beautiful bush setting so our members living with disability can enjoy and be\n supported in a safe and education environment. 

\n

", "itemId": 6746189, "name": "Our Backyard", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/our-backyard", "url": "/personal-fundraising-members/our-backyard", "releaseDate": "2017-07-12T00:00:00", "releaseDate_raw": "2017-07-12T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-08-07T15:44:13.847", "lastUpdateDate_raw": "2017-08-07T15:44:13.847", "counter": 30, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/our-backyard?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6746189&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/Images/OurBackyard/signs.jpg", "TEMP - Old URL": "" }, { "description": "

Ruby has had a tough start to life, born prematurely at 27 weeks and contracting Strep B Meningitis at just 31 weeks left her with brain damage. Regardless\n of all her trials Ruby is a determined, strong and happy girl, a credit to her parents and a joy to those she interacts with.

\n

After her rough start to life Ruby has come a long way; she is now a boisterous 6 year old who doesn’t let her cerebral palsy hold her back! Ruby has great\n spirit and love for life; she enjoys ballet, books, playing with sand, using her walker and is an absolute joy to meet and spend time with!

\n

Ruby’s diary has always been full of a variety of appointments; physio, occupational therapy, conductive education, horse riding, feldenkrais, hip surveillance,\n speech therapy and the list goes on! The early years are the most formative and she is ambitious to achieve her full potential.

\n

Contributions for Ruby will go towards an Intensive Therapy Program run by The Neurological and Physical Abilitation Centre (NAPA) which has an incredible\n success rate. The cost of the program is $10,120 which goes for 3 weeks, 4 hours of intensive therapy each day. This will give Ruby the opportunity\n to focus on select therapies that will suit her, such as; NeuroSuit, Cuevas Medak Exercise, Oxygen Therapy, Physical Therapy, etc. It is beneficial\n for Ruby to gain access to the program in her early years as this will give her a good foundation for an independent environment.

\n

Ruby’s family are hoping to raise enough funds to get her into four sessions within the next 12 months; the four sessions Ruby has already attended have\n already proved greatly beneficial. In fact they have been so beneficial that her scale of CP has been reduced from a level 4 to a level 3; this is\n extremely rare! Ruby has also managed independent steps through this therapy program!

\n

With your help, we will be able to give Ruby every opportunity to better her life. Every cent you donate will assist us in taking a step in the right direction.

\n

Thank you for your support and well wishes!

\n
\n

 

", "itemId": 6401375, "name": "Ruby Rolph", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/ruby-rolph", "url": "/personal-fundraising-members/ruby-rolph", "releaseDate": "2016-08-30T00:00:00", "releaseDate_raw": "2016-08-30T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-11T09:48:09.52", "lastUpdateDate_raw": "2017-07-11T09:48:09.52", "counter": 31, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/ruby-rolph?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401375&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401343", "Location": "Western Australia", "Image": "/images/personal-fundraising-images/updated-photo-17.5.16.jpg", "TEMP - Old URL": "" }, { "description": "

\n

“Ruby is an amazing little girl with such a beautiful shining personality that makes everyone who meets her fall in love with her, she is an inspiration and inspires me everyday with her courage, determination and love.” By her mummy Tanya\n

\n

Hello my name is Ruby or ‘The Rubsta’ I have the rare genetic disease called Prader-Willi syndrome.

\n

In short this means I have a low immune system, low to no metabolism and low muscle tone which delays me in all areas of gross motor skills – including\n bad stuttering when I am tired or sick. However the most disturbing part of my syndrome is the hunger that NEVER STOPS.

\n

Though I am on GH injections to help my muscles to grow – in theory giving me more energy to exercise which in turn helps prevent weight gain. Unfortunately\n due to my repertory issues I did not start GH treatment until I was 4 so I am already what most would call ‘obese’ – and get stared at in disgust\n accordingly – with very mean judgmental looks at my mumma too!

\n

What people don’t realize is that even just eating lettuce and water due to me missing the male chromosome 15 in my body – as instead I have 2 female\n chrome 15s. Because of this my body tells itself that it is hungry 24/7 - for the rest of my life! There is NO ‘switch’ to say I am full and make\n me stop being hungry. If left alone in an area where there is food, I will without thinking eat everything I can get my hands on until my stomach\n literally BURSTS and then I could die – if I don’t die of a heart attack first – so healthy eating, eating management and lots of exercise is the\n only thing that will save my life and of course a family that loves me very much and watch my every move. I could eat 9 raw cabbages and once finished\n still think I am hungry. This is not my fault and unfortunately I will get obese and have many health issues because of it.

\n

I am now 5yrs old, can walk and talk which ‘the Doctors’ warned my parents that – if at all I may not walk or talk till I am 5-6 – so we proved them\n wrong and I took my first steps at 31/2 and was talking at the same pace! J

\n

Though we have reached and conquered many amazing milestones, my hunger is getting stronger and stronger, whenever I see, hear about or smell food\n – I want to eat it, but truly believe and feel that I am starving even if I have just finished a full meal!

\n

Unfortunately our family home has a lovely open kitchen where as a family we have always used as the hub of our home as you have to walk thru the kitchen\n to get to any part of the house – my playroom included.

\n

This is rapidly becoming a serious danger and health risk for me and torment for my older sisters who are suffering because of my syndrome, but do\n without complaint as they love and care for me.

\n

Our goal this year is to help raise money to ‘HIDE’ our kitchen – make it into a magic ‘safe’ room, where all food, fluids, medicines, cleaning products\n etc. will be stored, cooked, displayed and kept safely away from all my senses so not to torment me or give me anxiety.

\n

For me personally it will mean that my dear older sisters would be able to get some of their ‘normality’ back – instead of having to spell food out\n to mumma when asking if they can eat (which I am now on to though don’t know what they are spelling I know why they are doing it and automatically\n say ‘Me too’) or to simply have friends back over to stay – because if we built a hidden kitchen with only one door that has a coded lock that\n I will never be told but my sisters and rest of the family can have – means all temptation and tournament and anxiety is taken away from me and\n it gives my sisters a chance to go eat a ‘normal’ size portion of food, in private without spelling or running off to hide in their rooms trying\n to eat what ever it is as quickly as possible before I might see! It also means they can have their friends back to stay as they can eat normal\n food and treats that everyone grows up with and feel “NORMAL’ again.

\n

My sisters love me so much they are willing to move into the playroom and share a room and give up their individual rooms so that we can build our\n secret kitchen!

\n

I feel very honored that they love me so much especially coming into their teenage years where most people have their own space, as they get older!

\n

So there you have my crusade for the year to raise approx. $45k to be able to knock out a few walls and put up some special sold lockable ones in a\n ‘Hidden’ kitchen to save my life and help my family to be able to cope with what can only be described as intense job of keeping me away from food\n as I grow.

\n

And I can never be left on my own or be fully independent as I will literally eat or drink myself to death! (Even the bathroom has been modified so\n the water access can be turned off at night so that if I got out of my room (which will require a alarm system soon for night time to wake mumma\n if I get up) that way I cant turn the taps on and drink until my tummy bursts either)

\n

This is a horrible stupid disease that effects not only my immediate family but all my family and friends that still want to share in my life – has\n defiantly shown us that the road will be long and troubled and that the only people you have to rely on is your immediate family – which I am so\n lucky to have!

\n

A huge thanks to those who make a donation, your support is so greatly appreciated and will make a big difference to me and my family. I know mummy\n is forever grateful that my life will be made easier and my future will be looking more hopeful.

\n

I hope that you are having the most beautiful day and lots of cuddles from me!

\n

Love Ruby xx\n

\n

(Facebook page ‘Ruby’s Quest’ – please pop over & say ‘hi’, learn about PWS or just come and join my journey ‘thru life with a lil difference’\n J)

\n

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\n

Hi My name is Bec and I am Ryan’s mum. I have set up this page to raise enough funds to purchase my 5 year old little boy an autism assistance dog.\n

\n

Ryan is such a sweet young boy but life isn’t easy for him, what he sees and hears is different to those around him. Our life is anything but normal\n and most daily tasks are a hassle such as feeding, schooling and any sort of outings like shopping or social activities.

\n

Ryan also has two sisters, Emma, 7, and Grace, 2 who just adore their brother, and would love to see him receive this puppy to help him and be there\n for him as a best friend. It will also give them the freedom to have some time and space to themselves.

\n

While it may seem like this is a lot of money to raise for a dog, I could give you multiple reasons as to why they are at such a high cost, however\n there are a few main reasons. First being that there is currently no government funding for trained assistance dogs and even NDIS funding will\n not cover the purchase or expenses of an assistance dog. So much time, resources and training goes into each assistance dog and they are all trained\n to specifically suit the individuals needs and abilities, it is quite a process and this takes hard work and time.

\n

We have set up this page to help with the financial cost of purchasing this trained autism assistance dog. Having an autism assistance dog for Ryan\n will help with his safety, as he has no concept of danger and will without worry run across a busy road, it will help him socially and also be\n a huge assistance with calming him when he has a meltdown. As a family, having an assistance dog will make our life a little easier as we can do\n more family trips, knowing that we have the assistance dog to help with any melt downs and keeping Ryan calm.

\n

Any donation big or small is appreciated by our family and will go a long way into making our dream achievable. Your support is amazing, thank you.

\n

Bec, Ryan, Emma & Grace.

\n

If you would like to follow Ryan’s journey, please follow his facebook page – www.facebook.com/1d1b1m\n

\n

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\n

Samuel’s Story!

\n

My name is Samuel Jesse Amiet and I am 7 years old. I have been diagnosed with: Cleft Palate, Gastrointestinal-Reflux, Cerebral Palsy, Epilepsy, Perthes\n Disease, DNA Repair Defect, Global Development Delay, Intellectual Disability, Anaemia, Speech and Communication Delay.

\n

This is my story: “I was born a little early in June 2009 and besides being very small everything seemed to be ok. That was until I was 3 days old,\n my Mummy and Daddy knew something just wasn’t right. After a whole day of tests, it was found that I had a Cleft of the Soft Palate. After 8 days\n in the NICU and with the help from Mum and Dad I was sent home with naso-gastric feeding tubes, specially designed Chu Chu teats and a whole bag\n of medical supplies.

\n

My absence from hospital was short; feeding issues meant I couldn’t gain weight, in turn meaning I easily got sick, and sometimes very sick. I was\n diagnosed with severe chronic reflux, I was in ALOT of pain ALL of the time. Finally on the 10th of February 2010 my Plastic Surgery team decided\n to operate to repair my palate. My cleft palate surgery went incredibly well. Due to my cleft palate I also required a set of grommets, this meant\n for the first time in my young life I could hear properly, and within days I begun making sounds, those of which a baby should begin making not\n long after their birth.

\n

On the 30th March 2010 my dad found me in the middle of a severe tonic clonic seizure. I was rushed to hospital and after a 25minute seizure spent\n two days there. It would soon become clear that it was much more, the seizures didn’t stop, ranging from 30 minutes to one hour and forty five\n minutes, over the next 2 years I would suffer in excess of 30 severe pro-longed seizures, and countless mild seizures. After a long wait I was\n finally diagnosed with Cerebral Palsy and of course Epilepsy. My life has never been the same; my time is shared between, Speech Therapy, Physio\n Therapy, Occupational Therapy, Music Therapy, Hydro Therapy and a multitude of other specialist and therapy appointments all over the Gold Coast\n and South Brisbane areas. I have been assessed and it has been determined that I have a Global Development Delay.

\n

In January 2014 I was also diagnosed with Perthes Disease. Perthes Disease has caused my legs and my ability to walk to deteriorate. I am in pain all\n of the time and now I’m not able to walk more than 40 metres without it causing excessive pain and discomfort. Due to this I am now in a Wheel\n Chair 50% of the time and restricted to very minimal, low impact exercise and very few activities. As a young boy I find this hard and very disheartening\n as I just want to be able to play with my big brother and my friends.

\n

In September 2016 after 8 months of consistent and unexplained regression in all aspects of my health I had a Naso-Gastric feeding inserted and now\n require a permanent feeding pump. In October 2016 I had a Gastrostomy PEG inserted to ensure my long term nutritional needs are looked after. January\n 2017 this was changed to a permanent Mic-Key button.

\n

Sadly the news just keeps getting worse. In December of 2016 I was diagnosed with an unrepairable DNA Repair Defect. It will takes months of DNA testing\n in the United States to determine what, if anything can be done from now on.

\n

On a high note I achieved something my family thought would never be possible. I started Prep in 2014; I am now in Year 3 and learning at my own pace.\n I love school, and socialising with my friends. I am starting to learn basic words, I wear R-Wraps on my legs and have special frames to help me\n be a little more independent using the toilet and washing my hands at home.

\n

My parents have been so good in helping me with as much as they can however sometimes they just don’t have enough for everything. The constant driving\n to appointments costs a lot of money, and so does all the extra therapies and equipment that I will continue to need. This page has been created\n to raise funds, for Speech, Physio, Occupational, Ophthalmology, Travel, Parking, Hospital and Feeding Requirements as well as Hydro Therapy Blocks,\n or any other additional therapies, resources or specialised equipment needs that I have ahead of me in my long journey to show the world just how\n strong I can be.

\n

With funds generously donated via Sunshine Butterflies you can help me thrive, and continue to show the world just how brave and determined I am. Thank\n you kindly in advance.

\n

Regards, Samuel Amiet, My Mummy, My Daddy and Big Brother Cooper

\n

\n

Please follow my journey through my facebook page:\n

\n

https://www.facebook.com/watchsamuelshine?ref=aymt_homepage_panel\n

\n

Or on Instagram @itssamuelsstory\n

\n

 

\n
\n

\n
\n

 

\n
\n
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\n

“Scarlett’s Smile”

\n

 Scarlett is a beautiful little Perth girl, with the biggest heart and most infectious smile. However, because of a very\n rare genetic disorder, she faces a number of challenges.

\n

She has something called Hypotonia, which just means she is very floppy and has low muscle tone. Scarlett was also born with a cleft palate, club foot,\n and a level of vision similar to legal blindness, as well as being at high risk of seizures. She is nearly two years old but unfortunately Scarlett\n cannot roll, sit, crawl or stand unassisted.

\n

She has been diagnosed with the GNB1 gene mutation, Global Development Delay (GDD), Cortical Vision Impairment (CVI) and sensorineural hearing loss.

\n

Scarlett receives support services from the Ability Centre and attends Carson St school but unfortunately needs much more therapy than the mainstream system\n can provide, and this comes at a great expense.

\n

She recently did her first NAPA intensive therapy program over in Sydney, and her progress was nothing short of amazing. She did 2 hours of Cuevas Medek\n Exercize every day for 3 weeks. These intensives teach new improved motor patterns through repetition, with Scarlett able to build upon skills learnt\n in previous days. Her head and trunk control improved incredibly well! We would like to register for 2 more intensive programs in 2018. However, these\n intensive therapies come at a massive cost. A 3 hour per day program would consist of 45 hours of therapy, and cost a total of $7,875.

\n

WE NEED YOUR HELP. Any donation, big or small, will make such a massive difference to Scarlett’s life. We would also appreciate if you could please share\n this page. To learn more about Scarlett and her journey, please visit her Facebook page (www.facebook.com/scarlettssmile)\n or Website (www.scarlettssmile.com)

\n

Thank you from the bottom of our hearts, Kate, Marcus and Scarlett XO

\n

 

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Shonaya is a bright and bubbly 11 year old girl who loves being outdoors and out in the community. She enjoys being read stories, watching her favourite\n TV shows, music and as all young girls do shopping…

\n

Shonaya has an undiagnosed condition, however her presentation is very similar to Rhett Syndrome/ ‘CDKL5, this means Shonaya utilises a wheelchair every\n day to get around with a person to assist her with this.

\n

Shonaya experiences multiple seizures (most days) these appear to fluctuate in accordance with an apparent development of resistance over time in relation\n to medication. Shonaya is dependent on others for all aspects of care in her life.

\n

Shonaya weighs 26.7kg and can be quite wriggly with fluctuating tone and requires two-person hoist transfers; support to eat (spoon fed); support for all\n personal care and hygiene needs she requires a wheelchair for mobility; she is non-verbal, but her smile will just melt anyone she meets. Despite all\n of these factors Shonaya still manages heaps of smiles every day and brightens the lives of those around her.

\n

Shonaya’s hips are both out and cause discomfort with lifting, whilst we can hoist her in the home environment we can’t hoist her into the car.

\n

Transport has been identified as a major barrier to Shonaya being able to access the community and is something that significantly impacts upon those who\n care for her. Shonaya has a team of 8 specialists that assist in ensuring Shonaya is as healthy and comfortable as possible and a few of the specialists\n are in Brisbane at Lady Cilento Hospital, which is another reason, why we would like to see Shonaya in an accessible vehicle. Shonaya is now 26.7kg\n and will only continue to get bigger as she gets older.

\n

In saying that it has become difficult, painful and risky to transfer Shonaya into a vehicle. Having access to her own accessible vehicle would mean that\n Shonaya could remain in her wheelchair and not need to be lifted in and out in order to travel to locations which would reduce the likelihood of an\n injury to both Shonaya and Shonaya’s caregivers.

\n

Please get behind this great cause as it will all assist in reaching our end goal of being able to buy a Wheelchair Accessible Vehicle that will allow\n Shonaya and her family and Caregivers the opportunity to get Shonaya out and about in the community more and be able to transport her to her specialist\n appointments that are a vital part of Shonaya’s life. Thank you so much for your support and kindness!

\n

 

", "itemId": 6744783, "name": "Shonaya Whitehouse", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/shonaya-whitehouse", "url": "/personal-fundraising-members/shonaya-whitehouse", "releaseDate": "2017-07-11T00:00:00", "releaseDate_raw": "2017-07-11T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-11T10:47:48.403", "lastUpdateDate_raw": "2017-07-11T10:47:48.403", "counter": 36, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/shonaya-whitehouse?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6744783&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/images/personal-fundraising-images/shonaya photo 4.4.17.JPG", "TEMP - Old URL": "" }, { "description": "

Tom is a statistical miracle. He had ruptured membranes at 17 weeks and continued to grow and develop until 29 weeks, where he entered the world in a hurry.\n Tom was born at 953 grams and a mere 33 cm long. Tom was doing really well until he picked up two different infections, both of which were life threatening.\n At 32 weeks we were told we’d be taking home our son at term and at 36 weeks we were told we probably should prepare ourselves that Tom wouldn’t be\n coming home.

\n
However, in true Tom style, he took us to the brink of despair and then decided to follow his own path back to living. Tom spent 290 days in NICU at the\n Royal Women’s Hospital in Melbourne and still holds the crown for the longest stay patient. Tom came home on full-time additional oxygen and with a\n feeding tube. At this stage Tom was categorized as having severe chronic lung disease, hypertension, severe oral aversion and global developmental\n delay, all of which you can grow out of.
\n

 

\n
However our reality was about to change. With no warning or prior suggestion, Tom was diagnosed at 2 as having cerebral palsy and a sensory processing\n disorder. With this came a life long diagnosis which presented itself through motor challenges and major speech delays. Tom’s never give up attitude\n saw him take his first independent steps 4 days before his fifth birthday and soon after this he went from being a totally non-verbal child to one\n that we’d often like to say ‘Hey, would you just stop talking for awhile!” to. Tom is an amazing little boy. His internal drive to succeed is why he\n is still here today. His cheeky personality is why you can’t help but love him!
\n
There are 3 life defining moments that stand out in Tom’s journey:\n
1/ At age 2 we took him to the NoTube clinic in Graz (Austria) to get rid of his feeding tube and consequently by the time he was 3 he was totally\n tube free (feeding and oxygen). This gave Tom a quality of life he’d never experienced before.\n
2/ The arrival of his baby sister Emily provided a comradeship and competiveness that saw him stay one step ahead of his sister in achieving milestones.\n Nothing can replace the importance of this sibling bond.
\n
3/ NAPA – therapy that was long and intensive yet suited Tom and saw him take his first steps and learn to converse without the use of his podd book. NAPA\n is an intensive therapy program run in California and now Australia which sees Tom complete 75 hours of therapy in 3 weeks. It’s long and grueling\n and challenges Tom past his comfort zone yet despite this, Tom loves it. At the end of our last intensive in LA Tom was in floods of tears because\n he didn’t want it to finish. He articulated that, ‘NAPA makes my body work better.’
\n
Tom attends NAPA therapy clinics 3 times a year which cost in excess of $10,000 each for the therapy plus the costs of flights, accommodation and carers\n for Emily. As well as NAPA, Tom has weekly speech sessions and fortnightly physio and OT sessions as well as weekly horse riding lessons (balance and\n core), tennis lessons (balance and reaction times) and swimming lessons (body in space). Add to this soccer clinics, cricket, little athletics and\n his neurologist will be happy!!His OT has suggested keyboard lessons would be wonderful for him to learn how to isolate the use of his fingers. Wherever\n possible, we find a fun way to teach the skill because at the end of the day Tom is still only an 8 year old child.
\n

 

\n
In the classroom at our local Primary School Tom is holding his own academically and currently uses modified equipment to access the same curriculum as\n his peers. Currently he uses an iPad and specialist software but in the future he will need to convert to a computer as well as adding additional software\n as directed by his team of specialists. At home, on top of his homework, Tom completes a daily physio program which builds strength and his skill base.\n Tom is learning to ride on an adapted bike. His physio is working with him to progressively gain the skills required for bike riding. We hope to get\n him into the bike program to help consolidate the skills. He has sensory motoric orthotics that help him fell his feet in space. All of this has led\n to a child who walked through the school gates in a walker almost 3 years ago and now kicks soccer balls and runs 23 laps of the school oval to raise\n money for the school in the whole school lap-a-thon.
\n

 

\n
We are setting up this page because we believe that harnessing Toms potential now gives him a chance at independence later in life. We believe if we put\n in the hard yards now Tom will develop the skill set that is required for independence but this level of dedication comes at a high price. Tom is awesome\n and we are proud to be part of Team Tom. He is the type of child who, once you’re part of this world, he takes you on his journey.
\n
Thank you for helping our son each his potential.
\n
To see more of Toms Journey please watch his inspirational stories – 2013 Marathon and his NAPA story\n
\n\n \n \n \n \n \n \n
  
", "itemId": 6431899, "name": "Thomas Roach", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/thomas-roach", "url": "/personal-fundraising-members/thomas-roach", "releaseDate": "2017-02-15T00:00:00", "releaseDate_raw": "2017-02-15T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-15T10:20:07.51", "lastUpdateDate_raw": "2017-02-15T10:20:07.51", "counter": 37, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/thomas-roach?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6431899&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401342", "Location": "Victoria", "Image": "/images/personal-fundraising-images/updated photo 2.11.16.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Hi, my name is Kezzia and this is our cherished boy Tiger who just turned two. Tiger was born with a Tracheo Oesophageal Fistula, Oesophageal Atresia\n accompanied with Tracheomalacia. In simple terms Tiger was born unable to swallow as his oesophagus was not connected, instead his oesophagus had\n connected to his windpipe and his windpipe was floppy. I cannot describe the emotions my husband and I felt being taken in an ambulance to the\n hospital in the big city for life saving surgery for my baby boy within hours of him being born, in short we were devastated.

\n

Tiger’s intensive surgery at day 1 was to disconnect the fistula, his next surgery was at 13 weeks old to join the 2 ends of oesophagus. Post-surgery\n Tiger couldn’t come off his ventilator, his floppy windpipe was pulled flat and he couldn’t breathe so we faced another surgery, Tigers only way\n forward was a tracheostomy (a tube entering his windpipe through his neck). All this time Tiger and I remained in intensive care two hours’ drive\n from my husband and then 2 ½ year old daughter. In total we were in intensive care at the Royal Childrens Hospital Brisbane for 5 months and went\n home with a lot of developmental work ahead of us. A big part of the developmental work was to teach Tiger to eat, the natural instinct to eat\n is lost after 3 months from birth and Tiger didn’t eat orally until therapy started at 8 months old. It took the good part of a year to master\n eating and drinking and I am happy to say Tiger is now not dependant on his feeding tube.

\n

Tiger still has a tube in his neck to breathe, as a consequence my husband and I tag team who is watching him as he requires 24 hour supervision to\n check he is still breathing, there have been some scary moments and we have saved his life on numerous occasions but we have carried on. Although\n it gets harder and harder each day due to all the uncertainty on when it will end, we remain tighter and stronger. Our beautiful daughter now 4\n ½ years old is busy, mischievous and just started school, she has had to take a back seat plenty of times due to Tigers needs coming first, both\n of her last birthdays spent around Tigers hospital bed.

\n

Our issue is that we fall through all the gaps in regards to help. We have received no respite or any payments to assist with paying a nurse/carer\n to come to our home or any other form of help in the community and as Tiger can’t go to day-care and we receive no day to day help. Both my husband\n and I work and are lucky to have understanding employers that allow us to juggle working from home while we also care for Tiger, in addition we\n have no family or anyone else nearby that can help with looking after Tiger and all of my efforts have been exhausted to seek any government funding.\n To pay for a carer to come to our home will cost in excess of $45ph, totally out of reach for us. On top of these costs when the day comes for\n Tigers trachy to come out we will then face intense speech therapy, costs yet unknown.Tiger has come along way but is still behind with his development,\n further therapies and specialised equipment such as gymnastics, occupational therapy, speech therapy, communication devices and applications are\n required to continue Tiger reaching goals of other children his age. All of these therapies have been at our own cost and very important to Tigers\n well being and development.

\n

We simply don’t get a break. Our last chance is this funding to also help source an “in home” carer for Tiger to allow us to continue to work and function\n as a family. Any donation, comment or thought for our situation will be cherished by our little family and my beautiful, strong and feisty Tiger\n Taylor.

\n

", "itemId": 6401379, "name": "Tiger Taylor", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/tiger-taylor", "url": "/personal-fundraising-members/tiger-taylor", "releaseDate": "2016-08-30T00:00:00", "releaseDate_raw": "2016-08-30T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-15T10:10:33.01", "lastUpdateDate_raw": "2017-02-15T10:10:33.01", "counter": 38, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/tiger-taylor?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401379&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/images/personal-fundraising-images/fundraising-photo.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Our lovely son, Tom, has fought lots of battles, yet still smiles and laughs so much. Born premature at 27 weeks, with many complications and multiple\n disabilities, our brave boy has undergone over 60 surgeries. Tom has proved and continues to prove countless people wrong about his abilities,\n in fact he strives to achieve anything he sets his mind to and thrives because he gets on with it and gets it done.

\n

Tom has a complicated head shunt joined in 2 places which cannot be knocked. This is tricky as Tom is severely vision impaired and wears glasses only\n to protect his eyes from bumps too. Tom is also hearing impaired but refuses to wear a hearing aide; he is pitch perfect and he cannot handle the\n adjustments to sounds.

\n

Turning 13 this month, Tom is very slight in stature and weight. He has trouble with chewing and swallowing lots of foods and can be tactile sensitive.\n Missing all his carpel bones, with some joint abnormalities and low muscle tone, makes breaking a fall difficult to protect his head and eyes.\n Tom has quite a weak core and would benefit greatly from some equipment to assist him building his core muscles and gaining some strength. It would\n also help him with his lower limbs and being more stable walking on uneven ground, particularly as he cannot see where he is going. Among other\n disabilities, Tom falls on the Autism Spectrum (to make life just a little more interesting).

\n

His achievements so far have astounded us. Tom absolutely loves music and learns the piano through Skype lessons. Computers and technology is also\n a love of his, which is fabulous as they are the tools he needs. Tom has been granted an assistance dog. Tom is a first to have an assistance dog\n (not a Guide dog), where he is the actual guide, not the dog. Starting high school this year has been a year long process of orientation and mobility\n and more work still needs to be done. We have used Daniel Kish from World Access for the Blind with great success and we would dearly love to engage\n his services again as he will be here in April.

\n

Our families’ financial resources have been greatly impacted, with caring responsibilities, ongoing medical appointments to several specialists, personal\n and physical development and education needs, it is a fulltime job. Trying to provide Tom with what he really needs is a challenge when we only\n have one income coming in to our household.

\n

We are so appreciative of people’s generosity and would dearly like to seek some support for some items that will have a great impact in assisting\n us. At high school, to help him keep up, Tom really needs some computer equipment and assistive technology, Orientation and Mobility training at\n school and camp, some cognitive sensory learning therapy with physio, resources, appropriate weekend support shoes, special training crates and\n storage. These are all things that are currently out of reach for us. We are very grateful for any support we may receive in helping us make a\n big difference for Tom and his future. Thank you for your time and support.

\n

Regards, Karen, John & Tom Goldsworthy

\n

", "itemId": 6744750, "name": "Tom Goldsworthy", "urlWithHost": "http://www.sunshinebutterflies.com.au/personal-fundraising-members/tom-goldsworthy", "url": "/personal-fundraising-members/tom-goldsworthy", "releaseDate": "2017-07-11T00:00:00", "releaseDate_raw": "2017-07-11T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-11T10:17:55.237", "lastUpdateDate_raw": "2017-07-11T10:17:55.237", "counter": 39, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/tom-goldsworthy?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6744750&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6744752", "Location": "Goodna", "Image": "/images/personal-fundraising-images/fundraising image.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Hi, I am Trinity Grace Harding and I am five years old. While I haven’t had the easiest start to my life, I get up each day and I make the most of\n it, I do not let my Cerebral Palsy hold me back and I continue to fight, just like a warrior!

\n

I have recently just hit a major milestone for any young person in their life, I am starting Prep! I am very excited about starting Prep as I will\n be able to make new friends and learn so much. Starting school isn’t as easy for me, I require more specialised Physiotherapy and Speech Therapy\n to help me communicate at school with my teachers and peers and allow me to participate easier in the school environment.

\n

While this is a necessity in helping me grow and learn, it does come at quite a large cost to my parents. At the moment it is costing Mum and Dad $300\n per hour of therapy and I am required to do an hour each day, 5 days per week to ensure I reach my goals of walking independently and communicating\n with my teachers and peers.

\n

My mum and dad work very hard to ensure I have the best chance at reaching my goals and they want to see me strive, it is just financially straining\n to pay for the requirements of therapy along with purchasing specialised equipment to assist my developmental needs. This is why we have set up\n this page to try and help alleviate some of this financial strain and still ensure I can reach my goals. Your kindness and support will make such\n a difference in our lives and is beyond appreciated.

\n

I am going to work extremely hard at school and I am so excited to start learning and just being like all the other kids.

\n

If you would like to follow my journey please like my Facebook page – www.facebook.com/assisttrinity

\n

Thanks again for all of your support and generosity, Trinity x

\n

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Welcome to the fundraising page for our dear friend Trudy who lives here on the Sunshine Coast and has recently been diagnosed with Multiple Sclerosis.\n Trudy is a single mother, daughter, valued colleague, dear friend, and mental health professional who has helped hundreds through difficult times.\n Trudy herself is now faced with the enormous challenge of living with Multiple Sclerosis and she now needs our help! Every day tasks are becoming more\n of a challenge for Trudy so we have set up this fundraising page to raise money to assist with the ongoing medical expenses along with getting assistance\n for general house work etc.

\n

All donations big and small are so greatly appreciated by Trudy and will make a big difference in assisting her in recovery.

\n

We thank you from the bottom of our heart!

\n

 

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\n

Hi Guys, My name is Will and I’m a 24 year old guy living with cerebral palsy. I love to live life to the fullest and keep myself busy. In order to\n gain further independence I would like to ask for your help. In the coming months I will be working with my assistance dog, Stella… Stella\n is a labrador cross retriever and she will be as expensive as she is beautiful!

\n

With ongoing costs such as veterinarian bills, food, personal care and grooming (just to start)…I would appreciate any assistance no matter\n how big or small. It means a lot to me and I’m sure Stella as well!

\n

More than just a donation I would love to hear from you and if you ever see me out please come and say hello. Thank you to for your time(and donation!)\n and thank you to Sunshine Butterflies for allowing me this platform. I am getting quite excited about Stella’s arrival and this money will help\n me to continue working with Stella. It really does mean the world to me so thank you from the bottom of my heart.

\n

Cheers guys, Will.

\n

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Donate to Sunshine Butterflies Donate Now

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ABN: 46 296 442 336 | \r\nNDIS provider registration Number: 405 000 9184

\r\n\t\t\t\t\t\t\r\n\t\t\t\t\t\t\r\n\t\t\t\t\t\t© { {globals.site.dateNow | date: \"yyyy\"}} Sunshine Butterflies | Privacy

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\n

Hi, my name is Kezzia and this is our cherished boy Tiger who just turned two. Tiger was born with a Tracheo Oesophageal Fistula, Oesophageal Atresia\n accompanied with Tracheomalacia. In simple terms Tiger was born unable to swallow as his oesophagus was not connected, instead his oesophagus had\n connected to his windpipe and his windpipe was floppy. I cannot describe the emotions my husband and I felt being taken in an ambulance to the\n hospital in the big city for life saving surgery for my baby boy within hours of him being born, in short we were devastated.

\n

Tiger’s intensive surgery at day 1 was to disconnect the fistula, his next surgery was at 13 weeks old to join the 2 ends of oesophagus. Post-surgery\n Tiger couldn’t come off his ventilator, his floppy windpipe was pulled flat and he couldn’t breathe so we faced another surgery, Tigers only way\n forward was a tracheostomy (a tube entering his windpipe through his neck). All this time Tiger and I remained in intensive care two hours’ drive\n from my husband and then 2 ½ year old daughter. In total we were in intensive care at the Royal Childrens Hospital Brisbane for 5 months and went\n home with a lot of developmental work ahead of us. A big part of the developmental work was to teach Tiger to eat, the natural instinct to eat\n is lost after 3 months from birth and Tiger didn’t eat orally until therapy started at 8 months old. It took the good part of a year to master\n eating and drinking and I am happy to say Tiger is now not dependant on his feeding tube.

\n

Tiger still has a tube in his neck to breathe, as a consequence my husband and I tag team who is watching him as he requires 24 hour supervision to\n check he is still breathing, there have been some scary moments and we have saved his life on numerous occasions but we have carried on. Although\n it gets harder and harder each day due to all the uncertainty on when it will end, we remain tighter and stronger. Our beautiful daughter now 4\n ½ years old is busy, mischievous and just started school, she has had to take a back seat plenty of times due to Tigers needs coming first, both\n of her last birthdays spent around Tigers hospital bed.

\n

Our issue is that we fall through all the gaps in regards to help. We have received no respite or any payments to assist with paying a nurse/carer\n to come to our home or any other form of help in the community and as Tiger can’t go to day-care and we receive no day to day help. Both my husband\n and I work and are lucky to have understanding employers that allow us to juggle working from home while we also care for Tiger, in addition we\n have no family or anyone else nearby that can help with looking after Tiger and all of my efforts have been exhausted to seek any government funding.\n To pay for a carer to come to our home will cost in excess of $45ph, totally out of reach for us. On top of these costs when the day comes for\n Tigers trachy to come out we will then face intense speech therapy, costs yet unknown.Tiger has come along way but is still behind with his development,\n further therapies and specialised equipment such as gymnastics, occupational therapy, speech therapy, communication devices and applications are\n required to continue Tiger reaching goals of other children his age. All of these therapies have been at our own cost and very important to Tigers\n well being and development.

\n

We simply don’t get a break. Our last chance is this funding to also help source an “in home” carer for Tiger to allow us to continue to work and function\n as a family. Any donation, comment or thought for our situation will be cherished by our little family and my beautiful, strong and feisty Tiger\n Taylor.

\n

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