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Tracy's daughter Megan has Prader-Willi Syndrome.
PWS is a complex syndrome, children who have this have various issues. For Megan, she has delayed development, she is five years old and is unable to speak more than a handful of words, she is learning sign language within a mainstream school currently although going through the process to be moved to a Special School. Children with PWS can at some point in their childhood develop an insatiable hunger. Megan hasn't yet got to this point but we know it may come someday. She is however very obsessed with food, she has a very structured routine for food and she doesn't like to deviate from it. She finds situations where food readily available very stressful as her diet has to be very carefully managed. Megan not only will feel constantly hungry someday, she also only needs about 60% of the calories that other children require as her body is unable to metabolise food like other children. She also has low muscle tone which means she tires easily and can't keep up with other children her age, she has terrible balance and falls a lot. She has a daily growth hormone injection which helps with some of her problems along with along list of other medications and supplements.
Despite all of this Megan is such a happy and loving little girl - she's a little superstar!
To raise much needed funds to go towards research to try and supress some of the more severe symptoms of PWS we have chosen to undertake the challenge of doing ten official runs/races of 10k and above throughout 2017 and we are hoping to finish with the Hull Marathon. Whilst we do enjoy running, this will be a massive challenge for us and we are ready to take it on! So come on - sponsor us!!!!!
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Running for Megan and FPWR
We are running 10 distance runs through 2017 for Foundation for Prader-Willi Research UK because we want to help fund more PWS research
We fund research in Prader-Willi Syndrome to give hope for a brighter future
Charity Registration No. 1141923