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Charlotte family launches foundation to raise awareness of rare disease

Derrian Hollingsworth and his two daughters have a genetic disease that only affects 3,000 people worldwide. They want the public and doctors to learn more about it.

CHARLOTTE, N.C. — A north Charlotte family is pushing to spread the word about a rare genetic disease that directly impacts them.

The Hollingsworth Foundation focuses on spinocerebellar ataxia 7 (SCA7), a disease similar to multiple sclerosis or Parkinson's disease, that only affects about 3,000 people worldwide.

Derrian Hollingsworth and his two daughters have the inherited disease.

“It can ravage an individual family, and it is ravaging our family,” Hollingsworth shared. “There's no treatment. There's no cure. So I couldn't just sit back and do nothing.”

The goal of his foundation is to express what they and many others are going through and the harm it can do to a family tree.

SCA7 is an unpredictable genetic disease that can develop anywhere from birth to later in life. It attacks the central nervous system and often causes blindness. With each generation, symptoms show earlier on, and every person with the gene mutation has a 50% chance of passing it on to their children.

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Inherited from his mother, Derrian Hollingsworth was diagnosed with SCA7 in 2012, but he did not start to experience symptoms such as decreased balance and mobility until around 2018. Now, he is trying to support his family off his disability payments because, in the past year, he was declared legally blind and had to quit his job since he cannot drive.

Despite his diagnosis, he focused on his daughters and the chance he has to help them create change by starting The Hollingsworth Foundation.

Hollingsworth launched social media campaigns on Twitter, Instagram and Facebook to teach others about the disease and share his family’s story.

“Having to see them being teenagers, and never have a life that I was at least able to have, it sucks” he said. “[It sucks] that I'm only 41, and I'm already on disability, and I'm retired, if you will, but to be 16 and know that you'd never even move out of the house, you're never going to drive, you're never going to go to college. That is difficult.”

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Because of the generational element of the disease, the progression of symptoms in his daughters was different. Three years apart, both girls started to notice a steep decline in their vision around age 13.

Derrian’s oldest daughter Kiyana, 19, has seen decreased motor function since her diagnosis. She is now unable to walk on her own and has been declared legally blind.

Learning from her older sister’s pattern of symptoms, 16-year-old Kelsey Hollingsworth is trying to make the most of life before she suffers the same fate.

Kelsey is graduating early from high school in 2023 because she fears by 2024 she might not be able to go to school at all.

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“I'm still trying to work and still go to school in person and just do activities and hang out with friends and do things that make me feel as normal as possible for as long as possible,” Kelsey Hollingsworth said. “But for the future, I don't really think I have much hope in the future. I just try to do as much as I can in the present.”

Kelsey said because her symptoms are mild now, people don’t really understand how quickly the disease could impact her everyday life, which makes it harder in some aspects of her life. For instance, because of her steep vision decline, she will never be able to get her license; a milestone her friends are celebrating right now.

For now, the Hollingsworth family is in contact with a SCA7 specialist at UC Irvine in California.

Dr. Albert LaSpada is one of the only doctors Hollingsworth could find who had even heard about the disease. LaSpada is providing the Hollingsworth family with guidance on how to limit the pain such as limiting their diet, stretching often and taking a supplement to alleviate pain.

“What we're likely going to see if anything is things taper off, so things to stop progressing,” Hollingsworth said. “We're not going to regress and get back to normal.”

Because of this, he just hopes that if enough people spread the word, they can help the next generation of people facing SCA7.

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