EYEWITNESS LOCAL NEWSEvery Day Tasks A Challenge For Those With Muscular Dystrophy
from Eyewitness News Online
Reported by: Katelyn Sykes
Web Producer: Heath Harrison
Reported: Aug. 15, 2013 4:22 PM EDT
Updated: Sep. 1, 2013 10:52 PM EDT
Tornado , Kanawha County , West Virginia
Sept. 1, 2013
WCHS aired the Muscular Dystrophy Association's "Show of Strength Telethon" Sunday night.
The annual show's goal is to raise money and awareness on a national level to support MDA's mission of helping children and adults affected by progressive and often fatal muscle diseases.
In honor of the telethon, we're taking a look at some local families affected by MDA, and sharing their stories with you.
For 28-year old Cassy Bays, 28, everyday tasks can pose a challenge.
"It's very difficult," she said.
Cassy is confined to a wheelchair and gets help breathing through a ventilator.
At three years old, she was diagnosed with a very rare form of muscular dystrophy called nemaline myopathy, a congenital, hereditary neuromuscular disorder that causes muscle weakness.
Her mother, Twylla, said she knew there was something different about her daughter so they traveled the Tri-State area to find out what.
"We just thought that she was very prissy when she was little because she did everything - she just did it slower than normal,” Twylla said. “She fell a lot, but she walked and she talked and she rode a bike. She swam she danced and she did cheerleading."
But Cassy's life changed forever when she was seven years old.
"I got sick and, at seven, I had a stroke," she said.
Cassy developed microplasma pneumonia and had a stroke. She was in the hospital for several months.
"She's been on a ventilator for 21 years and she has lost the ability to feed herself, to dress herself to do anything for herself,” he mother said. “I do everything for her."
But she still has some mobility in her right hand, so she can run her wheelchair and play games on the computer.
Cassy's mother said even though she is confined to a wheelchair, they don't let that stop them from enjoying life and do everything they used to do before she got sick.
"Just have faith and never change your life,” Twylla said. “Just do whatever you did normally. It might be a little harder but we got to swim with the dolphins last year. I mean, we do whatever we want to do and it is harder but it's worth it in the end."
And through the struggles of daily life, Cassy wants everyone to remember one thing.
"One day at a time," she said.
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