Saturday, July 23, 2011

Keep Walking

At two years old, Dean still is not having to deal with hyperphagia, the relentless hunger that will one day trick him into thinking that he is always hungry and never full. Some 2-year-olds ARE already dealing with this. From what I hear from other PWS families, it sounds a lot like 5 is the age that "it" begins to sink in for a lot of kids. And because we seem to know a lot of PWS families with a 5-year-old, it seems like each week another child is falling prey to this awful hunger. :(

I hate it. It makes me feel so sad because I know and love these families and I desperately wish their children (and they) were not facing this. And it makes me feel sad because I know that one day, as much as I can pretend that this won't happen to Dean, it will. He will finish a meal and tell us that he is still hungry, as if he'd never eaten. I can't worry about it too much right now because there's nothing we can do and we don't know what it will look like for Dean.

It was one thing when Dean was born to hear about the hyperphagia and think about it in a distant way, but it's another thing to know other children with PWS who are now dealing with it. Blah, blech, yick. Not fair.

It reminds me of why we are involved with FPWR: because we believe there is a better life and, in fact, even a CURE out there for PWS. We believe in Dean and everyone else with PWS. We believe that although God made them all just the way they are, he doesn't want anyone to suffer - though he will use it for good - and that he wants a cure, too. We're all in it together.

So we're going to take One Small Step for PWS in September, in Williamsburg, VA. If you want to join us, please do, or do a walk in your own town. If nothing else, we ask you to donate to the cause for a cure. Go here for more information: http://onesmallstep.fpwr.org/dw/users/deanmachine/williamsburg

Thanks. :)

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