4/19/2014

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One Small Step walk to help fund Prader-Willi research

One Small Step walk to help fund Prader-Willi research
BOISE - A Treasure Valley couple wants you to know more about a rare syndrome their daughter has and they're hoping you can also help raise money for research.

Imagine always being hungry - no matter how much you eat - you're still hungry.

And, having poor muscle tone - so poor, it's hard to walk.

That's what day-to-day life is like for three-year-old Madison Wells.

She has Prader-Willi syndrome.

Her parents, Deana and Jim Wells, are trying to increase awareness of this genetic disorder that occurs in one out of every 15,000 births.

For Madison, her speech is a little behind, and she can't climb well on the playground.

She can eat, but it's mostly soft foods, and must be in limited amounts.

"We have to watch her calorie counts," Deana said. "She only gets 900 to 1000 calories per day, because their metabolism doesn't work like ours does."

The Foundation for Prader-Willi Research says the syndrome is characterized genetically as an abnormality of Chromosome 15.

The Wells are holding a walk, called "One Small Step," at 10 am, Saturday, August 3rd at Veterans Memorial Park.

Proceeds are going to the Foundation for Prader-Willi Research.

In ten years, the foundation has funded over three million dollars and 50 PWS-related projects.

Register for the walk at: http://onesmallstep.fpwr.org/dw/walking/location/613.
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