Thursday, August 11, 2011

Getting Real

I hate even to post about this because I don't want to give it air time, but it's been on my mind lately....

Yesterday we heard about yet another family who got the diagnosis of PWS for their sweet daughter, Ellie. This happens all the time, and each time I think, 'Wait, this is STILL happening?' Because when PWS happened to Dean and to our family, it was a blow. Time stopped. It seemed like such a mind-blowing event, that this "rare" thing happened to us.

"Rare" doesn't hold much meaning anymore unless you're talking about a steak.

Stats for PWS are, from what I've read, somewhere between 1 in 10,000 and 1 in 20,000. No one really knows. Equally across males and females, and all ethnicities. So as long as more people keep being born, PWS is still going to happen.

We learned about PWS from early on and about the hyperphagia (relentless, physical hunger) that people with PWS face. We knew that one day, that would happen to our sweet Dean, too. Please don't say that Dean might be different and that it might not happen - PWS is not *that* kind. For now, there is no cure.

But we are holding out hope that there is one. There has to be. One day, when parents face a new diagnosis such as Ellie's did just yesterday, maybe the doctor will be able to say, "Good news... there is a cure."

As Dean gets a little older, the people who are now experiencing that relentless hunger are friends of ours whom we've met locally or at FPWR conferences. We know them, know their parents, know their lives... it's becoming real.

People ask all the time what they can do to help. I can think of a million things, but right now, I'm just thinking... help us with this. Help us fund a cure. And find a cure. And fight for a little boy and many others who deserve more.

http://onesmallstep.fpwr.org/dw/users/deanmachine/williamsburg



No comments: