MUSKEGON, Mich. — A Muskegon family is raising awareness of a rare disease their daughter was diagnosed with. FOX 17 spoke with them Friday about how it's changed their lives, and how they're hoping to help others.
13-year-old Kaydence Bryant keeps her spirits lifted by playing her trumpet and video games. Just a few weeks ago, she was diagnosed with Degos disease, an extremely rare disorder that blocks the arteries and restricts blood flow to affected areas. Over the course of a week she’s had multiple surgeries.
“First surgery was technically after midnight on Tuesday, May 23, she had the second surgery on Thursday, May 25, another surgery on the 27,” explained Gina Wise, Kaydence’s mother.
She says after her daughter’s second surgery, they found spots on her small intestines that resembled the same spots that were on her skin. From there, everything snowballed.
Right now, Kaydence is receiving nutrition through an IV, which is something that her mom says will be supplemented permanently. According to the National Institute of Health, there is no cure for Degos disease, only treatment.
“Some people may live with it for years. Every case is really unique, but what's key in all of them is finding it early and starting treatment early and then it doesn't progress like her case did,” said Wise.
Since they weren’t able to catch Kaydence's case early, they’re hoping to help others before it’s too late. The family is hosting a bake sale for Degos disease research and awareness on Saturday. Funds raised will also help the family financially. Insurance has covered most medical bills, but Family and Medical Leave only lasts for so long, and their bills at home are piling up.
“So right now I have no income, my husband's working but his hours are reduced because he's in the same situation as me, you can't be in two places at once” said Wise.
Both Wise and Kaydence’s dad are trying to support their daughter while also keeping their household together, but they say it’s been tough. They’re hoping Kaydence will be discharged soon, and that the honor roll student can soon return to one of her favorite places – school.
“I think the most important thing is just getting the word out, more so than being able to have this fundraiser and helping us financially, but if we can help just one person to not have to go through this then it kind of makes it worth it,” said Wise.
The bake sale is taking place tomorrow at 1636 S Mill Iron Rd. in Muskegon from 4:30 p.m.- 5:30 p.m. If you’re unable to make it, you can donate to their GoFundMe page here.
