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POV!






What a great way to kick of Prader-Willi Syndrome awareness month?!?
May 1st began PWS awareness month and our Point of Vue debut was a success. I had no clue we would be on the cover so that was a huge surprise to see, well hear...I think I was the last one to get a finally see the magazine. I am so thankful we had the opportunity for the awareness that this has brought to our area. Those are the sweet pictures above and here is the article link below.
So much awareness, I feel so completely blessed. 


Also, some more exciting news...Jake picked us up a copy of the local Fitlife magazine today because there is a story about Alison Desmore with PWS and race info as well. So, another way to gain awareness...which is exciting, but here is the other part. Jake says, there is a picture of a kid in there that looks just like Carter. It was an article pertaining to the Triatholon Carter participated in last year and it IS Carter! LOL
We were so happy and surprised to see his little picture in there. All the race excitement and magazine article in POV makes me feel bad for Carter sometimes. When he saw the POV cover and heard us talking about it yesterday he asked, "Why do y'all like Prader-Willi Syndrome so much?"


I know he will understand soon enough just why we seem to like it so much, truth is we don't like it at all, we actually hate it and what it does.
 
 
 
 
Here is the picture of Carter from Fitlife
 
 
Competing in his first Triathlon...Poor baby was struggling.

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