Cleveland woman navigates through ataxia with strong support system

May 17—The first time Stephanie Miller heard the word "ataxia" was when she learned she had it.

Now the Cleveland woman is doing what she can to slow its progression with a strong support system of family and friends behind her.

Her support system had organized a fish fry benefit May 7 at Blue Moon Bar and Grill in Kasota, along with two more coming up in Cleveland and St. Peter later this month and in June, all to help cover Miller's ataxia treatments.

"It's really humbling," Miller said of the benefits. "I can't come up with words. I'm very thankful for all the support."

Ataxia is marked by impaired balance and coordination and can be caused by an injury to the cerebellum, part of the brain responsible for balance and other complex motor functions. Miller suspects her ataxia is the result of a car crash in 2014.

After the crash, she started noticing subtle signs of something being off. Her balance wasn't the same, but Miller figured it would go away as she healed up.

Instead, it gradually got worse. Looking back, she thinks she was "in denial" of something seriously being wrong.

Gradually, though, she started slurring words and staggering around with a wide gait. To someone unaware of what happened, Miller said, it might look like she was drunk.

About four years after the crash, and seemingly countless appointments later, she found out ataxia was the reason why. Specialists set her up with trial medications, not covered by insurance, in the hopes they would slow its effects.

The treatments have shown signs of helping, although her ataxia remains progressive.

Miller and husband, Zach, have two children, Walter, 5, and Addi, 2. One of the hardest parts about having ataxia is not being able to run around with the kids, Miller said.

"My sincerest hope is that obviously there's a cure or treatment to stop it," she said. "But the reality is it's progressive, and one day I'll need a walker or wheelchair to get around."

Miller's mother and stepfather, Anne and Dennis Hiller, live within a couple of blocks of her, close enough to help out. Anne, who described herself as a "fixer," said helping out is something she can do when otherwise she feels helpless to fix her daughter's condition.

She credited family friend Chris Thomas with being a "rock" for the family. When Anne came to her bawling not knowing what to do, understandable for a parent seeing a daughter struggle, Thomas stepped in as an advocate for Miller.

During the toughest days, Anne said, the family is so thankful to have people like Thomas and Tommy Christensen to pick them up.

"Our town of Cleveland is a family," Anne said. "It's wonderful to live in that kind of community."

Thomas and Christensen helped organize the May 22 burger basket benefit at Cleveland's American Legion Post 207 from 4:30-7:30 p.m. and an American Legion Riders Chapter 37 benefit ride starting and ending in St. Peter on June 3. For more details and information on how to help, Thomas said to reach her at 507-420-2973.

The Blue Moon fish fry benefit came about through another example of the family's support system. Blue Moon owner Bret Haslip is a family friend and offered to host the benefit in support of Miller.

With close family friends like this at her side, Miller said she's hopeful her treatments will continue. She encouraged people not to hesitate when they feel like something is off inside them.

"When people are experiencing things that don't feel right, get it checked out," she said. "Don't wait."

Follow Brian Arola @BrianArola

Follow Brian Arola @BrianArola