Sophie has reached a year and we couldn't be happier with her progress. Sophie lights up the room with her smile and it's hard to believe that after all the fear and worries we had in the beginning that things could be going so great now. But Sophie still has Prader-Willi Syndrome (PWS).......and we have to remember this is the "honeymoon phase" and eventually, unfortunately, it will end.
Sophie has 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; 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 the hunger stop!
Al and I want Sophie to lead an essentially 'typical' life. We want to provide Sophie with all the opportunities we are able, despite her challenges. That is why we need your help to raise money for the Foundation for Prader-Willi Research so that we can find a way to treat this disorder and give Sophie and so many other children the amazing life they deserve. All proceeds from the One SMALL Step walks go to fund the Prader-Willi Syndrome Research Plan jointly created by FPWR and PWSAUSA.
Donate big or small. Every bit counts. Save your coffee or lunch money for a week. Help do what you can. Thank you in advance for all of your support.