By Stacy Jacobson sjacobson@abcnews4.com MOUNT PLEASANT, S.C. (WCIV) -- For Caleb Sizemore, 16, some loads are a struggle. Caleb was diagnosed with Duchenne muscular dystrophy when he was 7. "Sometimes it's just coming to the realization that you won't live as long. But you just have to make the best of what you've got," he said. "He loses his muscle strength over time. It makes him weaker than most kids. Makes him, he has to take a battery of medicines," Caleb's father Richard Sizemore said. The Academic Magnet junior is on the school crew team, but he's also part of Caleb's Cure Team. "It's important to raise [money] because it goes to research for people who have Duchenne muscular dystrophy. I have a mild form of it, but a lot of people have a lot worse symptoms and they need to be cured," Caleb said. It's a grown-up outlook for a boy who's had to grow up faster than most. He's raising money for the Muscular Dystrophy Association to find a treatment, or even a cure. "I've learned a great deal from Caleb. Caleb's one of my heroes," his father said. "It makes me feel honored and it makes me … Continue reading →

Contact Information Available for logged-in reporters only Newswise DALLAS March 26, 2014 Today, were going to make history, said 18-year-old Eric Ramos on the day UTSouthwestern Medical Center doctors operated on his ailing heart. Eric, who has Duchenne muscular dystrophy, is one of only three patients in the United States with the condition to receive a battery-operated left ventricular assist device (LVAD) to keep his weakening heart pumping blood through his body. He is the first patient in the country to be given a specific, smaller LVAD, which means doctors would not need to manipulate his diaphragm, which could compromise his already limited pulmonary function. Duchenne muscular dystrophy, a recessive X-linked form of the disease, affects around 1 in 3,600 boys. Diagnosed at age 6, Eric has used a wheelchair for the past seven years because his muscles, including his heart and lungs, are rapidly degenerating. Nevertheless, Eric has the heart of a champion. He views his latest challenge as an unreal accomplishment and says he is honored to be part of history, paving the way for other Duchenne patients with advanced heart failure. Lead surgeon Dr. Dan Meyer, Professor of Cardio Thoracic Surgery and Director of Mechanical Assist Devices, … Continue reading →

When it comes to matters of the heart, people often respond with a gut reaction rather than a well-thought-out plan of action. When Ilan Ganot, a banker at JPMorgan Chase (JPM) learned his two-year-old son was diagnosed with Duchenne Muscular Dystrophy, a rare form of the disease, his world stopped. It was the worst thing in the world. In my life. No question, Ganot said. With no real background in medicine, but a heart full of hope, Ganot vowed to stop at nothing to help his son live. - Ilan Ganot A reaction from the heart, yes. But one also driven by intense dedication and well-planned determination to succeed. From Bank to Bedside Ganots son, Eytani, was born a healthy, happy baby boy. But a few months into his life, Ganot and his wife Annie began to notice differences from other children. (He showed) delays compared to his age group, Ganot said. Usually kids crawl at six months, he crawled at a year. Usually kids walk at a year, he didnt walk until about 18 months. Once the realization set in, Eytani went through a series of evaluations, and the diagnosis at the end was low tone, meaning the young … Continue reading →