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Rett Syndrome Conference held in Utah

MIDWAY, Utah (ABC4 News) - It's a disorder so rare there are only 40 cases reported in Utah. Most of them are girls. It's called Rett Syndrome.
MIDWAY, Utah (ABC4 News) - It's a disorder so rare there are only 40 cases reported in Utah. Most of them are girls. It's called Rett Syndrome.

This weekend, people from all over the world are coming Utah to lean on each other for support.

Lucy Heimburger smiles like any happy girl, but her smile is only one of very few ways Lucy can communicate.

“They want to be a part of the world, but their body and their mind don't coordinate that well,” said Matthew Heimburger, Lucy’s dad.

Lucy is one of Utah’s cases of Rett Syndrome, a genetic disorder on the X chromosome affecting mostly girls.

“I call it a devastating disorder because the girls are born quite normal and somewhere around 9-12 months they start to essentially crumble in their parent's arms,” said Steve Kaminsky, International Rett Syndrome Foundation.

That crumble, Lucy's dad saw with his own eyes.

“They're learning to walk, talk, they’re singing and dancing and everything is great then this thing that was always there kicks-in and everything gets taken away,” he said. “Within a short amount of time she was on the floor just looking at us with her eyes blinking, trying to figure out what's gone wrong.”

At five years-old now, Lucy can't walk or talk. Even though there is no cure therapy at the National Abilities Center is helping.

“Physical therapy is very good for the girls, the more you can move the girls the better off they'll be in the long run,” said Kaminsky.

But so much about Rett's remains a mystery, just like Lucy's future, but her family says they'll never give up hope.

“We believe that she is going to walk, we won't give you a time table because we don't know, but we believe she's going to walk,” said Heimburger.
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