ZUMA Press Launches this week: zReportage: “Lincoln’s Shot” by Lara Cerri and John Pendygraft/Tampa Bay Times.
The Tampa Bay Times recently produced an eight-part series about a young boy from Tampa with a rare genetic disease and his family’s stop-at-nothing efforts to seek a cure. Lincoln DeLuna suffers from X-linked myotubular myopathy, a disease that affects one in 50,000 boys. His muscles are so weak, he can barely move. Lincoln needs tubes to survive. He can’t walk, talk or swallow. He’s a smart boy who has learned to sign with his right hand, one of the few parts of his body he can control. Maggie and Anthony want their son to have a normal life. Any life, really. Without a cure, Lincoln will die. And a single shot might save him. Because Lincoln’s condition is so rare, and because boys like him aren’t supposed to live this long, the disorder is not included on Florida’s list of illnesses ( like cerebral palsy or Down syndrome) that qualify for Medicaid waivers. Federal funds help support the healthy kids program, but each state decides what diseases to cover. Science had gotten there, in just 20 years. With the help of a desperate mom in Florida, a Boston researcher growing skin, a dog from a farm in Canada, a scientist cloning genes in Seattle and a former venture capitalist creating a California company to cure ultra-rare diseases. The miracle had happened. Just not for Lincoln. “We have to just enjoy him as he is, while he’s here,” Maggie said. “He wasn’t even promised to us for a day, and he’s about to turn 5.”..They hovered over his bed, singing a goodnight song until he fell asleep. “Hey,” she called a few minutes later. “Come see this!” A French company called Dynacure had just announced a new clinical trial of a different treatment. Officials hoped to start enrolling patients in a year or two. Maybe they just had to hang on a little longer. Maggie said to Anthony, “I’m going to email them tomorrow.”
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