Rare disease has Walters man down but not out

Life shouldn’t be this hard for a Southwest Oklahoma man who recently was diagnosed with a debilitating disease with no known cure.

You could call Dustan Stapp one in a million. His doctors do.

“So, I’ve been diagnosed with a super rare disease,” he said. “The head neurologist at OU Medical hadn’t even heard of it. It’s called Adrenomyeloneuropathy (AMN). They say I’ll be in a wheelchair by the age of 50.”

Stapp said his body doesn’t process long-chain fatty acids, so they build up and eat away his nerve coating. It’s an inherited condition affecting the spinal cord and affects roughly one in 40,000 people.

“I have to use a cane to walk and I’m 34,” he said. “I’m also a full-time plumber for Andy’s Plumbing Heat & Air.”

Completely normal until its onset at the age of 28, Stapp said he’d been an athletic and active guy. His mother has multiple sclerosis, so he thought he might, too.

“The way I feel now I won’t make it to 50,” he said. “The disease presents exactly like MS. Unlike MS there is no proven treatment.”

When he first realized something was wrong, Stapp said he was arriving to work at Goodyear. He got out of his truck to walk inside, and his legs started shaking, bouncing. He had to stop repeatedly before getting to the door.

Years passed and many tests were undertaken in an attempt to diagnosis Stapp’s malaise.

“I’ve been dealing with it forever,” he said. “None of my doctors had even heard of it.”

Neurologist Dr. Geetha B. Kandimala made Stapp’s diagnosis.

“She flat out said, ‘I know nothing about this disease, I am referring you to OU Medical,’” he said. “I waited months to see the neurologist at OU and when he came in, he had a look on his face like he was going to tell me I was fixing to die.”

Some days, Stapp feels like he will sooner than later.

“It’s awful,” he said. “There’s days I’ve got to have help getting in the shower. Every morning it’s a struggle to get out of bed and get moving. It’s like my joints and bones feel like concrete if I’m not moving for very long.”

Stapp and his wife Crissi are raising 9-year-old son, Lane. It’s hard to be a young father and husband when all you can do after a day’s work is sit in your recliner. He said the physical toll AMN is causing has also reached into the “mental game.” He’s now on antidepressants.

“I’ve always been very strong minded, now it just seems doom and gloom,” he said. “I don’t even feel like I’m going to get close to 50 because of the way I feel now.”

For the past year, Stapp has been using his Hoveround mobility scooter to feed his chickens and dogs on most days. For the most part, he said he continues to use his cane as much as possible.

“I feel like if you don’t use it, you lose it,” he said.

Even using a cane can be problematic. Stapp said working with the public can be really hard. Prejudice creeps in, even if it’s subconscious. He said his work team has been extremely helpful when issues arise.

“They immediately look at me like I’m not capable,” he said. “Nine out of 10 times when I leave, they want me back. I’m one of the most requested plumbers at Andy’s.”

Stapp credits his wife with bringing him out of his funks. She’s a life changer, he said.

“My wife is like an annoying ray of sunshine,” he said. “Whenever I start getting down on myself … she says, ‘When you get around in a wheelchair, it’s still you.’”

With no known treatments or cures, Stapp said he relies heavily on his pain management program. But with the American health care system, he said, “there’s not a lot you can do.”

“You can’t get approved for anything at my age,” he said. “I can’t quit working, I’ve got a family to support. And, anyway, I don’t want to quit.”

Listening recently to podcasts by Joe Rogan and Steve O from “Jackass,” Stapp has heard how stem cell treatment in other countries has benefited many with no hope.

“I am going to spend my life finding ways to fight this,” he said. “Several studies say that stem cell replacement could help. I say it’s worth a shot.”

“However, it’s expensive (around $36,000 for the treatment alone) and would require my wife and I travel out of the country.,” he said. “Let’s face it, I’ll be in a wheelchair by the time I save up that kind of money.”

Stapp has set up a GoFundMe page to raise money for the stem cell treatment. If short of his goal, he hopes to, at least, prepare his home for the wheelchair.

“Our home is not currently handicap accessible,” he said, “updated bathrooms and ramps in and out of the house would be my priority.”

Stapp said, despite it all, he holds out hope. He has too much to live for.