It’s been nearly 15 years since Ondie Mitchell’s husband Chuck was diagnosed with a rare degenerative disease, Spinocerebellar ataxia.
And although their journey has been a difficult and sometimes heart-breaking one, Mitchell says it’s been made easier knowing they’re not alone.
The couple will gather with those who share their plight and their desire to raise awareness of the disease this Saturday for the inaugural Country Skies Xtreme Hike & Festival for Ataxia Awareness.
The free, day-long event will feature musical entertainment; food and craft vendors; Disney characters Moana, Cinderella, Gaston and Belle from Character Visits 4 U; Hendersonville Poet Laureate Henry Jones and Hendersonville native Jeremy Cowart, a world-renowned photographer who was diagnosed with Ataxia three years ago.
The event will kick off at 7:30 a.m. when around 20 hikers from as far away as Colorado, Massachusetts, Minnesota and Michigan will embark on an extreme 26-mile hike along the Hendersonville greenway. Local walkers and hikers are welcome as well – either for the full hike or for a shorter one.
Mitchell, who chaired a small event a few years ago, said she was asked by National Ataxia Foundation Development Director Joel Sutherland to find a venue for the inaugural event near Nashville.
“They just thought that this area is really growing and it’s centrally located to our members who are all over the country,” she said. “Hopefully the event will only grow from here.”
The event will be held in the open field between the Fairfield Inn and Jonathan’s Grill on Indian Lake Boulevard.
Mitchell, who is the principal at Indian Lake Elementary School, says she’s excited about the opportunity to bring more awareness of the disease while uniting those who are affected by it.
“We just felt like more can be done,” she said. “There may not be a cure, but we wondered what can we do to improve the quality of life for those who have it now.”
An estimated 150,000 people have been diagnosed with spinocerebellar ataxia in the United States. A degenerative disease of the nervous system, symptoms include slurred speech, stumbling, falling and incoordination. At this time, there’s no known cure for the progressive, genetic disease.
When his own father was diagnosed with the disease in 2006, Mitchell said her husband, who had started to have some issues with his balance, decided to get tested as well.
When he tested positive, the couple wondered if their four-year-old son carried the gene as well.
They had to wait 14 years to find out.
Because he was under the legal age of consent, they wouldn’t allow the genetic testing until he turned 18, Mitchell noted.
“It was 14 years of praying and hoping,” she said.
However, the family received good news when her son Cade, now a high school senior, was finally tested.
“The day we got the call, I fell across my desk in tears,” Mitchell recalled. “I told the nurse, ‘we’ve been waiting 14 years for this.’”
Still Mitchell knows that not every parent is as fortunate as she was. And watching her husband transition from an active father who tussled with his son in the back yard to being confined to a wheelchair motivates her to do even more.
Both she and Chuck have spoken at national conferences that address the disease. Most recently, the elementary school principal addressed legislators virtually at an Ataxia on the Hill Day in September. Among the topics were dedicating more funding for research and expanding availability to telehealth for Medicare patients like her husband.
“There may not be a cure yet, but we just feel like more can be done,” said Mitchell. “We’re trying to be as involved as we can.”
The inaugural Country Skies Xtreme Hike & Festival for Ataxia Awareness will take place from 7:30 a.m. to 4 p.m. on Saturday, April 24 in the field between the Fairfield Inn and Jonathan’s Grill on Indian Lake Boulevard. Musical guests will include Matt Wynn, Warehouse 64 and Hendersonville resident Jason Kabler. Offerings from The Meat Sweats, The Thirsty Boomerang, N.Y. Pie and Kona Ice will also be available for purchase. For more information go to https://sites.google.com/view/country-skies-extreme-hike/home.