(CHARLESTOWN, Ind.) -- Brody Curtis has a big smile across his face, about the only part of his little body that is not swaddled in thick bandages. The one-month-old was born with Bart's syndrome, which means he is missing skin on much of his body and what skin he does have is fragile and can easily erode.
"He looked like he had third degree burns," said his mother, Heather Curtis, a 33-year-old high school math teacher from Charlestown, Indiana. "The doctors could almost see his brain."
Bandages cover Brody's arms from his elbows to his fingers and from his knees to his feet, as well as around his skull. It takes the Curtises about an hour to change the dressing and apply a salve, which they must do each day to prevent a life-threatening infection.
Bart's syndrome is a genetic condition that is part of a larger spectrum of inherited skin disorders called epidermolysis bullosa, according to the Mayo Clinic. Its hallmark is a blistering response to minor injuries, heat or even rubbing or scratching.
Brody also has blisters inside his mouth and on his tongue, which is typical in patients with the disease.
Epidermolysis bullosa or EB strikes about 1 in 20,000 children and there are about 30,000 cases nationwide, half a million globally. Bart's syndrome occurs just one in a million, according to Curtis.
Brody's doctors don't know if his skin will ever grow back, but they hold out hope that one day he could lead a normal life.
"We do know that different forms can cause early death in life and it can cause skin cancer," said his mother. "Some people go on to be blind or have deformities in their bodies."
"But we just don't know," she said.
Heather and her husband Chuck, both healthy, are carriers of the genes that cause Bart's syndrome. Their daughter Mckenna, 5, is also disease free.
Couples who carry the gene for the disease have a 25 percent chance of passing it on to their children. Prenatal testing is available to couples before conception for families at risk.
There is no effective treatment for Bart's syndrome, other than bandages to avoid trauma and infections. New molecular approaches are being developed including bone marrow transfers and fibroplast injections, according to Dr. Jouni Uitto, chair of the department of dermatology and cutaneous biology at Thomas Jefferson University in Philadelphia.
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