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Fourth grader Kera Mingus from Forsyth is doing what she can to help find a cure for Juvenile Dermatomyositis, an autoimmune disease affecting her and about 5,000 other children in the United States. KSMU’s Shannon Bowers describes her struggle.
Mingus was diagnosed with Juvenile Dermatomyositis, called JDM, in September of 2011 after seeing three different doctors. The disease is rare and affects children and teens continuing into adulthood. Before her diagnosis, Kera loved to dance. But due to her illness, she had to take a year-long break.
Her father, Jeff Mingus, explains that JDM flares up when a child gets sick and the immune system speeds up to fight off the virus. In a healthy child, once the virus is gone, the immune system slows down. But not in kids with JDM.
“Children that have this, the immune system does not slow down. So it’s continually working and it has to find something in the body to work against so, it works against the child’s muscles and skin. It creates rash, muscles soreness, muscle deterioration and other various things,” said Jeff.
Since her diagnosis, Kera has started taking seven different medications. She does physical therapy to regain her muscle tissue, and she has infusions once a month.
“I don’t like it. When I get that, I don’t feel good at all. I feel like my belly is stuffed full of water and medicine and it’s all juicy and its gross,” said Kera.
Kera has come a long way since last September. Thanks to her medications and therapy, she has gone from taking a wheelchair to and from class back to her old dancing self.
“It’s been really fun. I do a lot of clogging and then I am going to start contemporary. And I also do jazz, ballet and point...and then I do gymnastics. It is a lot better than just having to sit around and watch everybody else do stuff and you not,” said Kera.
And what's remarkable about her situation is that she's taking it into her own hands: since there's no cure for JDM, Kera has decided to raise awareness of this disease so other children can be diagnosed sooner and have medicine made available to them. She's also raising money
For her cause, Kera is hosting a "mini-golf" tournament Saturday, September 29th. The mini golf tournament is at Brookeside Miniature Golf in Branson. For more information visit our website at KSMU.org.
She says she intends to donate that money to the "Cure JM Foundation," which is searching for a cure to her disease. She also hopes to snag the attention of local doctors and health care providers.
For KSMU News, I’m Shannon Bowers.