“I feel like if I’m frustrated or stressed or anything, I can get on my bike and everything goes away when I’m riding it,” says Bailey. “I can feel the wind on my face, which is nice.”
But last Monday, her recumbent bike was stolen from her Belleville home. She relies on the bike to stay active with her muscular disorder.
“Friedrich’s ataxia,” says Amy Kruse, Bailey’s mother. “It’s a degenerative neuromuscular disease, so it’s inherited.”
Neuro divergent, that’s the phrase Kruse and a friend created, a powerful term, to describe her physical disorder. One in 50,000 people in the United States are affected by Friedrich’s ataxia.
The Kruses found a support group of FA families and a bike for bailey last year.
“She gave Bailey the bike she couldn’t use, so Bailey could try and maintain mobility for a while longer,” says Amy, describing another FA friend and family. “So we’ve had it for almost a year.”
The Belleville teen isn't letting this slow her down. On Saturday, she'll be waterskiing with the Missouri Disabled Water Skiing Association at Creve Coeur Lake.
This Paralympian, who uses the bike to compete in track and field, is hopeful she'll get her bike back, or at least a replacement from her favorite Doctor Who, actor Matt Smith. The family has set up a GoFundMe account to raise money for a possible replacement.