Sunday, July 8, 2012

For those outside "Prader-Willi Land"

After posting last week about our new project, FamCare, I read a post in one of the PWS listservs which I want to share with you.  It describes a parent's feeling of utter joy in finding a place for their adult son.  I know - we all do - that not everyone has this opportunity, and this is why IPWSO has developed its FamCare support; to help families along this rocky road, hopefully to a productive and happy ending.


"After four very difficult years, with many, many ups and downs, our son is finally part of a community where he is just like everyone else, and where the staff "gets" the strengths and needs of folks with PWS.   He has joined some great young gentlemen  and he is over the moon with joy. The young men have graciously welcomed him, and are helping him settle in. Finally, I am feeling the relief that my son will be able to live a healthy, happy and productive life. I feel like we won the lottery!


I wanted to share this with you all, as you are the only folks who will truly understand our joy after so much struggle. No one understands the day to day life of living with PWS like us families. While we love our children and they bring us great joy, they present so many unusual issues and cause incredible stress, that those outside of "Prader-Willi Land" will never understand. For the first time in a long time, I am at peace and can rest."


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