Posted: Apr 27, 2010 11:20 AM by Carina Corral
Updated: Apr 27, 2010 11:20 AM
The progress a Templeton girl has made in the months since we first introduced you to Cheyenne Willis is astonishing.
The 11-year-old underwent brain surgery in hopes of reversing the effects of a rare neurological movement disorder called Dystonia that developed three years ago, causing her to lose control of her muscles and leaving her crippled and almost voiceless.
" It's definitely affected her. She was a cheerleader, she played soccer, she was just like any normal 8-year-old girl," said her father Dustin Willis back in January when we first interviewed the Willis'.
Cheyenne had told KSBY News, "sometimes when I'm at school I don't even go out to the playground cause I'm sort of embarrassed."
In February, she underwent deep brain stimulation surgery, or DBS, in which doctors implanted a brain pacemaker. Stimulators deep in her brain are connected to two batteries placed inside her chest by wires that run under her skin.
It was turned on last month and the results were both instantaneous and surprising.
" I'm not that sore and, um, I don't move around so much," said Cheyenne.
" The thing that wasn't suppose to happen was she wasn't supposed to get her voice back through DBS, but she did. She's got like 95% of it back. It's amazing," said Dustin.
Talking and, also, texting are just a couple of her major victories. As she regains control her muscles, she continues to conquer everyday tasks.
"She wasn't able to shampoo her hair because her hands were crippled in. She now can shampoo it. Yes!" Dustin explained to us in excitement.
The pacemaker is permanent, so Cheyenne will need to have the batteries surgically replaced every 2-4 years.
She has a hand-held device at home that monitors the batteries to make sure they are working properly.
Cheyenne will also have to undergo surgeries on her legs and feet for damages done after years of not walking on them.
This way, someday, she can walk back into her old life.
There are two fundraising benefits being held for Cheyenne.
The first is a fashion show next Friday, April 30, from 6-10pm at Robert Hall Winery in Paso Robles, which KSBY's Carina Corral will be emceeing.
All proceeds from the silent auction will benefit Cheyenne.
The second event is Friday, June 4 from 6-9pm, at Denner Vineyards in Paso Robles, where all of the proceeds will be donated to her family for medical expenses and to raise awareness about Dystonia.