Ataxia is a rare neurological disease that affects up to 150,000 people in the United States. One family from Lincoln is hoping by sharing their story, more people will become aware of the disease.
Ataxia affects a person’s ability to walk, talk, use fine motor skills, and can even be fatal.
2-year-old Stryker Quellhorst was born with an extremely rare, non-progressive form of this disease.
Stryker’s mom Kourtney Quellhorst says, “At about 3 months we realized he was struggling to see. He would be able but he would kind of look through you. Then I also noticed he could not hold his head up.”
Kourtney said at 4 months she knew something was wrong — even after doctors said they couldn’t find any problems initially. “His MRI was clean,” she says, “and so then they weren’t really sure and moved on to genetics.”
Stryker then had a Whole Exome Gene test done, which tested Skyler’s genes against his parents’. They discovered Stryker has a very rare form of this disease called Spinocerebellar Ataxia type 29.
“Stryker will always have it and it won’t ever go away. So he fights every single day against his own body to be able to walk, talk, sit, eat properly to be able to function properly,” says Kourtney.
Although Stryker has many obstacles to overcome, his family has found it to be a relief that they finally know what they can do to help him. And they say he’s been improving a lot recently.
“Six months ago he could not sit on his own, and now he can sit on his own,” says Kourtney. “It wasn’t 6 months ago he was in a walker… Now he is just scooting around in the walker and keeps going and going.”
Stryker goes to weekly therapy sessions and practices walking and speaking every day. His parents hope this will give him the best life.
Stryker’s father Josh adds, “Not a ton different than what you have with a normal 2-year-old. As far as getting better it’s really going to be up to him and his determination and his fight and want to really.”
For families that may be going through something similar, the Quellhorsts say never give up.
“You know just keeping fighting and that’s what I did,” Kourtney says. “I fought every day for Stryker. I had that mommy’s gut. I knew it wasn’t just a developmental delay. You kind of feel like you’re going crazy but you don’t and you’re not.”
The Quellhorsts will be representing the state of North Dakota at the Bataan Memorial Death March next year. This march supports the National Ataxia Foundation and honors the thousands of soldiers who’ve served in the Philippine Islands during World War II.
They will also be having an upcoming fundraiser in January at 1603 Main Events. You can also donate by texting JMB25 to 71777.