H-PASO ROBLES

Jun 29, 2011 1:14 PM by Carina Corral

Young girl with rare disorder takes first steps in years

At an age when a young girl should be worrying about clothes and boy bands, a 12-year-old Paso Robles girl is having to learn how to do every day tasks, all over again.

Cheyenne Willis contracted dystonia when she was just eight-years-old, but it went misdiagnosed until she was 10.

It is a rare neurological disorder that causes a person to lose control muscle movements.

When KSBY News first interviewed Cheyenne, she was a fragile 11-year-old girl after the disorder left her crippled and nearly voiceless.

Fast forward a year-and-a -half and she is a confident and very talkative pre-teen.

"Now the main problem is for me to stop talking cause I constantly talk and talk and talk," said Cheyenne whose not only talking these days, but also walking.

The disorder caused the bones and muscles in her left foot to curl inward and downward.

A few months ago she underwent corrective foot surgery and she is now walking again for the first time in years.

"Right now I can only walk with my braces because they're kind of like my muscles...and they keep my feet straight, so they won't go back down," said Cheyenne.

To help her control her muscle movement, about a year ago doctors implanted a brain pacemaker connected to two batteries placed inside her chest.

She is now conquering everyday tasks many of us take for granted.

"She's able to walk to the restroom, stand in the shower, do her own hair. She's pretty independent now," said Dustin Willis, Chyenne's father.

What doctors thought would take years to accomplish, the hope is for Cheyenne to be walking without braces by summer's end.

She and her father would also like to thank everyone who came out to a benefit held in her honor last year.

The community helped to raise $11,000 that has been put in a fund in Cheyenne's name for future medical costs.

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