ST. CLAIR SHORES, Mich. (WXYZ) — Rachel Buyle spends 6 hours a day, 3 times a week, in her bandage room.
Watch Evan Sery's video report:
"It's routine, it's not always easy," Buyle said.
The 36-year-old, who was born and raised in Sterling Heights and recently moved to St. Clair Shores with her husband, lives with a rare skin disorder called Epidermolysis Bullosa, or EB. Her skin is so fragile that even the smallest bump while riding in her wheelchair can be painful.
"Like these, I'll slow down…I have two cushions on here, sometimes I'll put a third depending on where we're at," Buyle said.
Any amount of friction can cause her skin to blister or shear off. Last summer, Buyle's left arm, from just below her elbow, was amputated to prevent the spread of skin cancer — a common effect of EB.
Her husband, Stephen Buyle, says Rachel is the most positive, energetic person he knows.
"I love her independence, I love her resilience, I love her resourcefulness," Stephen said. "Obviously, she has all these issues, but she's never pessimistic about it, never down about it, never depressed about it, never lets her condition control her fate or her life."
We met Rachel yesterday during our Let's Talk stop in Sterling Heights:
During the school year, Rachel works as a substitute teacher in Roseville. In the summers, she drives for Lyft. The money she saves is going toward a power wheelchair she says would give her a smoother, less painful ride.
"I just want a smooth ride," Buyle said.
The tractor-style power wheelchair would provide that, but Buyle says her insurance won't help — classifying the chair as a recreational vehicle rather than a medical one.
"They want me to get a chair that, like, the footrest moves out, can lean back. I don't need all that," Buyle said.
Buyle initially wanted to buy the chair on her own, reluctant to rely on others. But a few months ago, her mother started a GoFundMe page — much to Rachel's chagrin. The goal is to raise $23,000 for the new chair, which Buyle has only had the chance to ride once.
"And it was really nice, you don't even feel like you're riding in a wheelchair, it kinda just glides over, feels like you're just walking, I guess," Buyle said.
So far, the campaign has raised just over 35% of its goal.
"It would just change our world, and how we would get to explore the world together," Stephen said.
You can find the GoFundMe page here.
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