Rare skin disorder does not stop this little fighterArticle reprinted courtesy of Mtn States Health Alliance
Bailey Danner, 4 years old and full of personality, lives with a rare genetic skin disease called epidermolysis bullosa (EB) that causes excessive blistering and abrasions. There is no cure for it, but Bailey refuses to let EB keep her from enjoying life.
Instead, she puts her fights up. That’s the expression Bailey has for putting up her fists like she’s ready to fight – against this disease. “She’s a fighter. All kids who have EB are fighters,” said her dad, Ronnie Danner, retail pharmacy manager for MSHA’s HealthPlus (formerly Wilson Pharmacy) in Boones Creek. Danner grew up in Mountain City, while his wife, Patria, is from Butler.
The organization that raises EB awareness and research money is the Dystrophic Epidermolysis Bullosa Research Association of America, known as DEBRA. They call it “the worst disease you’ve never heard of.” Last month, during National EB Week, the Danners were part of two fundraising and awareness events in downtown Johnson City called “Putting Our Fights Up for EB Awareness.” Bailey had a personal fundraising page online with a photo of her with her “fights” up.
That will to fight the disease, coupled with an amazingly positive attitude, has allowed Bailey to get through it all. She is a remarkably bright, outgoing girl who never complains, despite the pain and inconvenience caused by the disease.
Like almost everyone else, Ronnie and his wife, Patti, didn’t know what EB was when Bailey was first diagnosed, and learning about it was overwhelming, even for someone with Ronnie’s medical background. “There are proteins in our skin called keratins and they provide the glue that holds our top and bottom layers of skin intact,” he said. “Bailey has mutations in her keratins. She has the least severe form of EB called Simplex. The most severe subtype is Dowling-Meara. She definitely does not have it as bad as some other children with the condition. Her mother and I have to lance blisters all over her body every night, apply antibiotic ointment if needed, and change bandages on a weekly basis.”
Caring for Bailey has fallen into a routine now for the Danners, but things were tougher at first. She was born with skin missing from her wrists, the tops of her feet and behind her knees. She suffered from a high fever and “had blisters the size of water balloons hanging from her skin,” Ronnie said.
But EB is so rare that diagnosis and treatment were difficult. JCMC doctors decided to transfer her to a specialist at Monroe Carell Jr. Children’s Hospital at Vanderbilt. She had various complications over the first weeks of her life, but after some scary days Bailey’s condition stabilized and she was eventually able to come home.
She has gradually improved and the Danners believe it will continue to get better. At first she was bandaged from her neck to her toes, wrapped up like a little mummy. Now Bailey requires much less bandaging on her body, although even with insurance coverage the Danners still pay $200 per month just on the specialized bandages they need, Ronnie said.
Doctors initially were afraid Bailey might not be able to walk or even wear clothes without severe blistering but she now does both and can even walk barefoot on pavement. She does have to be very careful because it doesn’t take much to cause more of the painful blisters. But Bailey is very active, running and jumping and crawling all over the place.
“She’s in pre-school now, and at first that was an adjustment,” Ronnie said. “Some of the kids thought she was weird so we talked to the teachers about it, and Bailey even stood up in front of the class and talked to the kids. She told them she was just like them except she just gets boo-boos easier than they do. She said, ‘I get blisters easy, but I don’t call them blisters, I call them boo-boos.’ The kids asked her if the boo-boos hurt and she said ‘Sometimes.’ ”
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