Family suffering rare disease brings awareness, hopes for cure
CHARLOTTE, N.C. (WBTV) - A Charlotte family struggling with a rare neurodegenerative disease called Spinocerebellar Ataxia 7 (SCA-7) wants to spread awareness to eventually find a cure.
Derrian Hollingsworth and his two daughters have the genetic and incurable illness that makes it hard to walk, talk and see. It attacks the central nervous system and impairs your nerves. When you have it, your children have a 50% chance of getting it, too.
“Until they make a cure, I have to deal with the bad stuff no matter what,” said his 19-year-old daughter Kiyana.
By now, she’s in a wheelchair, legally blind and unable to work.
“I won’t be able to get my license or go to college or just do stuff that most people look forward to doing,” added her 16-year-old sister, Kelsey.
That’s why Derrian created the Hollingsworth Foundation, a nonprofit raising funds and awareness for SCA-7.
“If I wasn’t doing this, I would literally just be sitting here watching my daughters decline. And I can’t do that. I can’t do it,” said Derrian.
He says he hopes sharing his story will inspire someone to come up with a cure one day. He adds that donations to the Hollingsworth Foundation will go towards SCA-7 research and victims who suffer from it.
If you want to learn more or donate, you can do so here.
Dr. Albert La Spada, who’s researched this disease out in California for 25 years and has been in contact with the Hollingsworth’s, said SCA-7 affects about 1,000 people in the United States.
“What’s really upsetting about this disease is it runs in families and the disease gets worse as it’s passed from generation to generation,” he said.
La Spada said they are currently working on a therapy in mice that they hope eventually works in humans.
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