Scarlett Whitmore

Scarlett Whitmore

 

Hi, I'm Scarlett Whitmore

 

“Scarlett’s Smile”

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

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, 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 cannot roll, sit, crawl or stand unassisted.

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

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

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 Exercize every day for 3 weeks. These intensives teach new improved motor patterns through repetition, with Scarlett able to build upon skills learnt 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 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.

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 this page. To learn more about Scarlett and her journey, please visit her Facebook page (www.facebook.com/scarlettssmile) or Website (www.scarlettssmile.com)

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

 

Help Scarlett Whitmore

To Donate to Scarlett Whitmore, please use the form below. Thank you for your generosity.













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Fundraising Appeals

Hello, I'm Abby Davis

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 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 m...

Read my story

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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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\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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\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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Donate to Sunshine Butterflies Donate Now

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

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", "params": { "name": "Template - Footer" }, "webapps_12": { "moduleName": "webapps", "moduleDescriptor": { "templatePath": "/Layouts/WebApps/Personal Fundraising - Members/list.html", "parameters": "render=\"item\",id=\"35707\",filter=\"random\"", "apiEndpoint": "/api/v3/webapps", "objectType": 34, "objectId": -1, "adminUrl": "/Admin/CustomContent_ItemList.aspx?CustomContentID=-1" }, "editableFieldTypes": { "description": "Html", "itemId": "Id", "name": "Text", "url": "Text", "releaseDate": "Date", "expiryDate": "Date", "lastUpdateDate": "Date", "weight": "Number" }, "items": [ { "description": "

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.

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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.

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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.

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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

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