Rare disease creates rare friendship

Local News

SIOUX FALLS, S.D. (KELO)– One of the worst parts of having a rare disease is not having anyone else know what you’re going through. Sean Baumstark and Kyle Bryant the men who are behind the podcast ‘Two Disabled Dudes’ know exactly how that feels. That’s why they’re in Sioux Falls helping others feel a little less isolated. The rare disease that bonds them has also created an even rarer type of friendship. 

A disease diagnosis can close a lot of doors, but it’s opened up the chance for Baumstark and Bryant to visit Sanford Research. 

“It’s a beautiful day out there,” Bryant said. 

10 plus years of friendship, the two bond over beer and have an affinity for anything athletic. To say they can tell each other anything is an understatement. 

“It was just at breakfast this morning, Kyle made fun of me. Which is normal,” Baumstark said. 

“He was trying to spread the butter on his waffle, and I was like, ‘you got that? you need some help there?” Bryant said. 

“He’s a jerk, but it’s this back and forth humor that someone was like, you guys must be really close,” Baumstark said. 

That’s what friends are for. They help you find humor in things that aren’t really that funny, like a disease called Friedreich’s Ataxia. It’s a disorder that damages the nervous system and impairs movement. Baumstark has it. 

“My mind wants to do more than my body will let me,” Baumstark said. 

And so does Bryant. 

“You look up on Google and you see, you know, I’m going to be in a wheelchair and will likely lose all ability to take care of myself and I’ll likely die a premature death due to heart disease,” Bryant said. 

Both men spent Friday in a Sioux Falls lab to participate in local research, as Sanford scientists study and try to cure this disease. Dr. Peter Vitiello says having them here not only helps his work, but it also helps area families battling F.A. 

“I know that Kyle and Sean are regarded as rock stars to them. To be able to meet these guys is an incredible feeling for the patients and families,” Vitiello said. 

“We’re always constantly looking for the next thing we could do to have an impact on either this condition or other people living life under the shadow of a rare disease,” Baumstark said. 

“We’re all teachers of each other and we’re all students of each other as well,” Bryant said. 

F.A. is how Bryant and Baumstark became friends. 

“We actually only see each other only two or three times a year, but I probably talk to him more than any other person in my life,” Baumstark said. 

The two are using their stories and platforms to support others just like them, because they say it’s nice not having to face a rare disease alone. 

“It’s really great to have someone who doesn’t feel sorry for you,” Bryant said. 

If Freidreich’s Ataxia has shown Sean Baumstark and Kyle Bryant anything, it’s that life is a series of doors; sometimes closing, sometimes opening. They also prove no matter which one you face, it always helps to have a friend right beside you. 

“There’s always a reason to get out of bed. There’s always a reason to keep moving forward and to put one foot in front of the other,” Baumstark said.

Their podcast ‘Two Disabled Dudes’ is on Apple and Google podcasts. You can also stream their documentary, The Ataxian

Copyright 2020 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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