Friday, April 26, 2013

Living with Prader-Willi Syndrome

Living With Prader Willi Syndrome - The Doctors TV show

I just wanted to share this link for any readers that do not know what Prader-Willi Syndrome is as PWS awareness month is just around the corner. This sweet little boy has the same thing that A~man has. My son has rarely cried like this boy does because he is hungry, rather if we let him he would talk about the next meal/snack continuously. Everyone with PWS is different...with a lot of similarities...if that makes sense.

The video of him having a meltdown brought back memories as when A~man was younger we went through many pairs of the point we took a break from him wearing them for a short time. Fortunately meltdowns have really decreased over the years but it seems when one thing decreases another behavior emerges. Right now we deal with him sometimes saying something inappropriate or totally off the wall to strangers and friends.

Ultimately though with our son there are so many positives to his whole being despite his many challenges. I cannot describe how blessed I feel to be his mama. May is PWS awareness month and I hope to share more about the syndrome in my blog for that month.

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