Monday, May 21, 2012

Passing

On a friend's Facebook page:

"So sad to hear of another PWS teen who passed away. My thoughts and prayers are with her friends and family. It's an unfortunate reminder to why we are raising money for research... so we don't outlive our children."

A few days ago, an 18-year-old girl with PWS passed away. I wish I could say that this was an isolated incident, but it's not. It happens all the time.

Years ago, the lifespan of someone who had PWS was 20 years, max. When Dean was born, we were told that if his weight could be controlled, there would be a shot at a normal lifespan.

I think I've mentioned before about the higher-than-normal risk of sudden death (for unknown reasons) in people with PWS. This scares the life out of me if I think about it. Which is why I usually try not to think about it. I check on Dean at night sometimes while he's sleeping, and I'm really grateful to hear his voice in the morning, no matter how early it is.

Already, we've gotten a lot of, "he has PWS? But he's so skinny!" Yes, Dean is pretty lean, for now. Even those of a normal weight with PWS have a much higher percentage of body fat compared with the general population, so they can experience the health problems of those who are overweight without *actually being* overweight. So being a normal weight isn't even a guarantee.

THIS IS NOT OK.

If you are so moved, please help make it better. Support the PWSA(USA) or our page for the One SMALL Step for Prader-Willi Syndrome Richmond. The money to One SMALL Step will go towards research through the Foundation for Prader-Willi Research.

Praying for the family of that sweet girl who grew her wings and is hungry no more....

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