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Survival Race for Sammy-Joe
Racing to save Sammy-Joes life and Raising awareness
Welcome to Sammy-Joes Survival Race , this has been set up to help Raise awareness on a rare life threatening illness and also to help keep Sammy-Joe surviving , he is the eldest survivor of this condition and the money raised will help to provide for his needs , he is extremely photosensitive and cannot be exposed to light which means he spends everyday indoors and hiding from the light as the UV slowly kills him , we have set up this account in order to help provide for solar protective clothing , suncream , toys to entertain him and for all of his medical needs , we are trying to build him an indoor playground this way he can enjoy his days and still be protected from the light .The fund is also set up to help to continue to raise awareness and to also enable us to help link other families that have children with TTD to the right medical experts , I have set up a trustfund and a support group to help to continue to help others and to continue to raise awareness in Sammy-Joes honour . The Funds Raised wil also help to provide all medical equipment needed in order for Sammy-Joe to continue his race of survival .please help keep my boy alive , his warmth , laughter and love of life continues to warm the hearts of people all over the world . Trichothiodystrophy is a life threatening illness and Sammy-Joe is the eldest survivor here is his webpage http://www.vp-it.com.au/sammyjoe/ please read more about Sammy-Joe and read his online journal http://www.caringbridge.org/ok/sammyjoe Life has been extremely hard for Sammy-Joe Sammy-Joe has had surgery for a food peg as he has lost his ability to chew and swallow after his recent regression We understand and know that his condition is progressive and at the moment we are dealing with our grief. Sammy-Joes trip to America has been postponed due to his recent condition and recent stay at the hospital. Sammy-Joe is now 17 and we have raised money to go back to the USA. He was going well up until now, but has now hit a stage of regression. He is losing his ability to speak which has been extremely hard for him adjusting to his new way of life with his food peg, which we have named "POLLY ". All the new medications he is on and just the new way of living is a also a big adjustment. He is also using his wheelchair more often, and I suspect that there will be more changes to Sammy-Joes life as he gets older, reminding everyone that this is a neurodegenerative disease and as time gets on Sammy-Joe may or may not lose some other abilities. Because his condition is so rare it is still unknown as to what to expect, but what we do know is that it is a life threatening illness and DNA cannot repair itself. Cells die off and mutate due to the UV exposure, no matter how minimal it is. So what ever happens it is irreversible and it is highly likely that it will progress, and will be a progressive deterioration. This has been quite difficult for us to accept and is very painful to watch our beautiful boy slowly deteriorate. please help by donating and making a difference to his life , If you wish to send a cheque donation please contact Maria Liistro on sammyjo2@bigpond.com.au and I will send you details of where to post thank you for your kindness and generosity , we are grateful to you Maria and Joe Liistro

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Total Donations: $370

Goal: $5,000

$0 7% $5,000
Goal

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