When Patricia Furlong's sons, Christopher and Patrick, were diagnosed with Duchenne muscular dystrophy in 1984, the doctor simply said, "There is no hope." At that time there was no treatment for the disease, the major type of muscular dystrophy and the most common fatal genetic disorder.
Duchenne strikes only boys and leads to progressive muscle weakness, an inability to move the arms and legs, and, eventually death. Yet while Furlong, 63, a former ICU/CCU room nurse, was often overwhelmed, she didn't give up hope. "I remember one day I told Chris, 'I want a miracle,' she recalls. "And he looked at me and said, "'Miracles don't just happen for one or two of us, Mommy. They have to happen for all of us.'"
Furlong threw herself into creating those miracles. In 1994, she established Parent Project Muscular Dystrophy to bring parents, researchers and doctors together to fundraise and advocate for better care for Duchenne patients. PPMD's lobbying efforts resulted in Congress passing the MD-CARE Act in 2001, which designated funds for research on muscular dystrophy. As a result, boys with Duchenne now walk into their teens and 20s.
Her own sons stopped walking at 9 and died at 15 and 17. But every time Furlong meets a new family, she thinks, ""All I ever wanted was to buy five minutes more of life for my sons. I can't fix everything for these families. But I can try to buy them five minutes more."