The gene produces a miniature version of a protein called dystrophin, that boys with muscular dystrophy are missing or don't have enough of. The gene therapy works by infusing trillions of harmless viruses that has been genetically modified to ferry a gene to patients' muscles. They also started looking for better options.įinally, they volunteered Chase, who's now 8, and Dylan, who's now 5, for a study testing an experimental gene therapy for Duchenne muscular dystrophy. And now you're wondering: How much time am I going to have with them?"įinazzo and her husband started giving their sons steroids to help them even though the drugs can cause side effects and can't slow down the disease. You're mourning the loss of the life that your child should have had."įinazzo couldn't help but wonder of her children: "Are they going to be able to go to college? Are they going to live that long? Are they going to be able to fall in love? Have children of their own? You thought you were going to have soccer practices. "You end up going through a mourning process. "It's absolutely devastating," says Susan Finazzo. Most people with the disease die in their 30s or 40s. Eventually, their hearts and lungs give out.
Most boys end up in wheelchairs before they become teenagers. The disease, which almost exclusively affects boys, destroys muscles. It affects an estimated 10,000 to 12,000 children in the U.S. While rare, the disease is the most common inherited neuromuscular disorder among children. So Susan and her husband Chris Finazzo were stunned when doctors told them both boys had Duchenne muscular dystrophy. He's got some little tiny little orthotics for toddlers," she says. He fell down the stairs at his pre school a couple of times," says his mother, Susan Finazzo, 40, who lives in Miami.Ĭhase's younger brother, Dylan, was more agile. But he had trouble climbing playground equipment. But they didn't think it was anything serious. When Chase Finazzo was just a few years old, his parents noticed Chase was pretty clumsy.
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