Metro-East News

She has a muscular disorder, but her three-wheel bike gave her freedom. Then it was stolen.

Bailey Kruse, 17, has Friedreich's ataxia, a neuromuscular degenerative disorder, and one of the ways she can stay active is with this recumbent bike, which was stolen July 17.
Bailey Kruse, 17, has Friedreich's ataxia, a neuromuscular degenerative disorder, and one of the ways she can stay active is with this recumbent bike, which was stolen July 17.

A Belleville teenager’s recumbent bike, one that she uses as one of her only ways to stay active on her own, was stolen from near her house.

Bailey Kruse, a 17-year-old senior at Belleville West High School, has Friedreich’s ataxia, a degenerative neuromuscular disorder. One in 50,000 people in the U.S. are affected by the disease. Bailey’s FA impacts her balance and muscle control, and the bike is a way she can stay active with her friends.

So when it was stolen July 17 from Bailey’s Belleville home, she was devastated, her mom said.

“(Her bike) represents hope, the ability to keep moving is something that represents hope, not just to Bailey, but to others (with Friedreich’s ataxia),” said Amy Kruse, Bailey’s mom. “It’s not the loss of a thing, it’s the loss of an ability.”

Bailey must use a wheel chair and the bike is an easy way for her to still be able to be active with her friends. They can go on bike rides together, and it’s a way for Bailey to stay “out in the world,” Kruse said.

bailey kruse
Belleville West High School junior Bailey Kruse has a long list of athletic accomplishments and is able to maintain her grades, too. Principal Rich Mertens said she does that despite the extreme fatigue she can feel because of a degenerative neuromuscular disorder called Friedreich’s ataxia. By Lexi Cortes acortes@bnd.com

She has other activities she enjoys — she does shotput, discus and javelin through with the Disabled Athletics Sports Association in St. Louis, and she recently began archery. But the bike represents freedom, Kruse said. Bailey can’t get her driver’s license because of her FA, but she can get places by herself on her bike.

The Kruses got the bike from another woman with FA, who had no use for the bike anymore because her legs no longer functioned. That’s in Bailey’s future, too.

She was diagnosed with FA at 8 years old, and her doctors told her she’d be in a wheelchair by the time she was in high school, and that she probably wouldn’t live past 30. The disease is degenerative, so Bailey is constantly fighting the muscle loss. The bike was a tool the family could use to keep her active.

“We operate on the presumption that we’re going to keep working to be as strong as possible, every day, every week, and plan for the future,” Kruse said. “Because what we really hope is that they find a cure. If they find a cure, then she has to be a functioning member of society.”

Kruse said police have no leads on where the bike might be, or who took it.

A family friend has set up a GoFundMe page to help the Kruses buy Bailey a new bike.

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