Your Family

Jan 21, 2010 1:29 PM by Carina Corral

Healthy Living: Templeton girl hopes for a chance at a normal life again

A young girl in Templeton, who has lost the use of her legs because of a rare disease, has the chance at living a normal life again.

Like so many girls her age, Cheyenne Willis plays with her dog, loves her dad, and argues with her little brother.

What sets her apart from other 11-year-olds is a rare neurological movement disorder called Dystonia.

" It's definitely affected her, she was a cheerleader, she played soccer, she was just like any normal 8-year-old girl," said Cheyenne's father, Dustin Willis.

It caused her to lose control of muscle movements and has even attacked her voice box.

" Sometimes when I'm at school I don't even got out to the playground cause I'm sort of embarrassed," said Cheyenne.

For two-and-a-half years, Cheyenne went misdiagnosed.
It wasn't until her grandmother saw a segment on Oprah, profiling a boy with dystonia, that Cheyenne's father took her to a see specialist in this field. "As soon as she walked he looked at her and said oh my gosh, this is Dystonia," he said.

Her dad said it did not have to get this bad, adding that it likely could have been treated had it been caught earlier. "There's other procedures you can get other than DBS. There's Botox that treats it and even medications."

Now that she has been diagnosed, Cheyenne is a candidate for Deep Brain Stimulation surgery, or DBS.

In the coming months, she will have what is called a "brain pacemaker" implanted, giving her a 70-percent chance at a normal life again.

As she flips through a photo album, Cheyenne likes to remember those times that she hopes won't just be memories.

Meanwhile, Cheyenne's father hopes to have a fundraiser in the spring to bring awareness to this disease so other parents can learn the symptoms and avoid the progression of the disorder.

If you'd like to donate to the benefit, e-mail Dustin Willis at sweetdoggisweetcakes@yahoo.com.

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