Darren: Dystrophic

He’s all boy. He wants to play baseball. He jumps on a trampoline and also has a swing set in the back yard. He wants to wrestle his older brother. Recently he also started to love skating, even though a fall gave him a wound that didn’t heal for two and a half weeks. That meant especially painful bandage changes. He said it was worth it. Darren Martinez doesn’t let RDEB slow him down, said his mother, Krystal Martinez. That makes her nervous, but she’s torn because she also wants him to be happy. “If he gets hurt, we patch him up,” she said. “He goes through cycles of pain, but it’s what he wants to do.” Blood flowed from Darren’s mouth when he was born, and skin on his hands and feet sheared away as doctors rushed him to a neonatal intensive care unit. The first time his mother saw him, about six hours later, her second son was bandaged from head to toe. His fingernails and toenails fell off within his first week. But Krystal and Michael Martinez feel lucky that they live near Children’s Hospital Colorado, where a team of doctors trained in EB treatment now oversee every aspect of Darren’s ongoing care. It takes a village: A gastrointestinal specialist, an anesthesiologist, two primary ​care doctors, a dermatologist, an ophthalmologist and a dentist. Darren needs to have his esophagus cleared every three to six months. His eyes often get abrasions in the middle of the night, so he can’t open them for a day or two afterward. He uses a wheelchair at school because he tires easily. In spite of it all, Darren doesn’t focus on EB, and he has a very big heart. Writing a school essay recently about his hopes and dreams, he didn’t mention his disability: He expressed concern for kids who don’t have families. He wants to be an art teacher when he grows up. He’s really good at drawing.​