GRAND RAPIDS, Mich. — A Muskegon family is asking for help from the community after their daughter was diagnosed with a rare disease.
Kaydence Bryant first developed white lesions on her skin. According to her family, she never picked, itched or complained, and they saw no need for concern. That changed on May 19.
"She came home and then that evening and she says to me, 'Mom, my stomach hurts'. And we kind of figured it was just something she ate or some sort of stomach bug," said her mother, Gina Wise, as to when they first realized something was wrong.
Her condition worsened.
"We just kind of figured that, you know, that weekend, she's got a stomach virus, or she ate something bad at school and she'll be fine. Well, Monday came, and she wasn't any better. So, she didn't think she could make it down the stairs of our apartment, so we called the ambulance."
Bryant was transferred from Trinity Health in Muskegon to Helen DeVos Children's Hospital in Grand Rapids, where she remains. She had surgery to repair a perforation, but doctors made a critical discovery during the second surgery.
"They found two sections of her small intestine that had become necrotic. And there were these same little white lesions all over the entirety of her small intestine," Wise said. "So, the surgeon at the time, he'd never seen it, had no idea what it was. So he reached out to a bunch of different specialties, including rheumatology and hematology, infectious disease, pretty much everybody he could think of that might know what was going on."
Bryant was diagnosed with Degos disease, a condition scarcely recorded in medical literature, which affects roughly 1 in 39 million people.
"What happens is there's these little blood clots that form in the blood vessels themselves, and they restrict the blood flow to whatever area of the body it's affecting," said Wise, describing the general symptoms of Degos.
Bryant's case is severe, and while there is no known cure, her treatment includes weekly IV infusions, among various other measures.
"The thing about Degos is each case is very unique, and how it presents the severity of it, things like that. She also needs shots of Lovenox, which is a blood thinner, every 12 hours for treatment," Wise said.
Bryant now has had four surgeries, and in six months, her family says doctors hope to reconnect her small intestine, but Bryant will need IV supplements for the rest of her life.
There has been a GoFundMe set up for the family, and they are also planning a bake sale at 1636 South Mill Iron Road in Muskegon on July 1 and July 2 from 10 a.m. to 7 p.m., to help alleviate the costs of transportation and other necessities while Bryant continues receiving treatment. Donation buckets can be found at ENA locations in Muskegon and at the Muskegon Rec Club.
The family is also in the early stages of planning a benefit dinner as well.
Bryant's family describes her as a "happy-go-lucky girl" who enjoys anime and video games, while also being an honor roll student, a member of her school band and gaming club. Most of all, they look forward to the day where she can come home from the hospital.
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