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 Kaid Nutton

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 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 diso...

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

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

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\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)

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