Aunt Rocks little man, and Uncle Skip s big helper. This is Alex our nephew, he is my brother Joe s youngest son. As most of you know Alex was 22 months old when his daddy suddenly and tragically passed away at the young age of 42 as if that wasnt enough. Alex was born with Prader Willies Syndrome ( PWS).What is that? I know that is what we were saying. Its a rare disorder present at birth that results in a number of physical, mental and behavioral problems.The most common problem they all share is hunger, yes they constantly feel hunger, and let me tell you it is heart wrenching, to tell them they cant have something to eat when they are crying that they are hungry, but you have to control there eating or they will eat themselves to death. My sister in law literally has to put locks on the cabinet & refrigerator as all familys who have children with ( PWS) heart & gut wrenching! You would think that when they go to bed at night they are free from hunger while they sleep, wrong they dream of food, it controls there life 24-7. So I encourage all my fb. Friends &Family Please Please check out Prader Willies Syndrome on the Internet. We are hungry for a cure. I will be posting more on this in the coming months ahead, for I am hosting with a few special friends a Poker Run in May of 2015 watch for further details ahead. Peace & Love!!!
Posted on: Sun, 24 Aug 2014 14:21:45 +0000
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