Here we are, a full year later! Hard to believe a year has gone by already. At 1 year old Daniel is growing like a weed, he is smart, active, curious, and draws smiles any and everywhere he goes! He also still has Prader-Willi syndrome (PWS). Right now he is the most perfect little boy anyone could ask for (and, in our eyes always will be).......that being said, we know that this is the "honeymoon phase" and eventually, unfortunately, it will end.
Daniel will have life-long challenges, most of which we are prepared to accept. We can handle the behavioural issues, we will handle the cognitive delays, we can deal with the possible speech impediment, we will deal with the motor delays, what we are not prepared to deal with, what we refuse to just accept, is the constant, insatiable hunger.....that is the significant part of PWS, that is the part we refuse to accept as insurmountable.....there HAS to be a way to make it stop and we won't quit until it is stopped!
Scott and I are devoted to giving Daniel the most wonderful life and we want to provide him with all the opportunities we are able, despite his challenges, we want him to lead an essentially 'normal' life. That is why we need your help. We are devoted to raising money for the Foundation for Prader-Willi Research so that we can find a way to treat this disorder and give our precious little boy and so many other children the amazing life they all deserve. All proceeds from the One SMALL Step walks go to fund the Prader-Willi Syndrome Research Plan jointly created by FPWR and PWSAUSA. Please help us and donate now!