There’s nothing more heart warming than an infant’s smile, but where one-month-old Brody Curtis is concerned that smile is the only sunshine peeking through a swathe of bandages. “He looked like he had third degree burns,” Heather Curtis, a 33-year-old math teacher in Charlestown, Indiana, told ABC News. “The doctors could almost see his veins.” Heather and her husband, Chuck, didn’t immediately know anything was wrong when Brody was born, but the doctors knew right away. “When he came out my husband saw him and he didn’t know anything was wrong,” Curtis told ABC. “But the doctor knew something wasn’t right and took him to the warmer and started cleaning him up instead of putting him on my chest.” Brody Curtis was born without skin on his arms, legs, and scalp. The little boy was born with a severe case of epidermolysis bullosa (EB), an inherited skin disorder resulting in skin blisters in response to minor injuries, heat or friction, The Mayo Clinic states. Unfortunately for Brody, other symptoms include deformity or loss of fingernails and toenails, internal blistering – on the throat, esophagus, stomach, intestines and urinary tract – in addition to skin thickening on the palms and soles of the feet, dental abnormalities, excessive sweating and difficulty swallowing. The infant’s arms are bandaged from his elbows down to his finger tips, from his knees to his feet and around his skull. Altogether it takes the Curtises close to an hour a day to change the dressing and treat their son to prevent a life-threatening infection. EB strikes one in 20,000 children with about 30,000 cases across the United States and half a million globally, although Brody’s condition – recessive dystrophic – occurs once in every million children. “We do know that different forms can cause early death in life and it can cause skin cancer,” said Brody’s mother. “Some people go on to be blind or have deformities in their bodies…but we just don’t know.” The Curtises are carriers of the gene causing EB but have a daughter, McKenna, 5, who is disease free. Couples carrying the gene have a 25 per cent chance of passing it onto their children, ABC reports. No effective treatment exists for EB – which has varying levels of severity – other than to continually wrap and change Brody’s bandages to avoid trauma and infections, Dr. Jouni Uitto, chair of the department of dermatology and cutaneous biology at Thomas Jefferson University in Philadelphia, told ABC. “In the most severe forms, children can die in a couple of days or weeks after birth,” Uitto told ABC. “The skin is not functioning, or they have infections and eventually develop malnutrition and some aggressive squamous cell cancer.” Uitto said on the milder end there’s an increase in tendency to get blisters and erosions on their hands and feet when they have trauma. Curtis said Brody’s doctors are unsure whether all his skin will grow back. “There are few success stories. A lot of it’s pretty bad, there are a lot of bad pictures not knowing what’s going to happen to him in the future,” Heather Curtis told WHAS news. Brody is now at home with his parents after staying at a children’s hospital in Kentucky, but will soon travel with his parents to Cincinnati Children’s Hosptial, which houses a special EB clinic, for further testing. “He doesn’t show any pain until we do the bandages,” Curtis told ABC. “He’s gotten a lot better. All of his appendages are healed pretty good, except for his left leg. The skin is growing back and it scabs over and is not like an open wound anymore.” Regardless, Brody’s parents remain cautiously hopeful Brody will be able to live like any other young boy. “We hope he’ll be one of the lucky ones and still be active and play sports and grow up to be a normal kid,” Curtis said.
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