On Aug. 28, he became the second person in the world to receive an experimental gene-therapy treatment that researchers hope will restore his blood to normal. Lucas Parks, tired and sore after treatment, rests motionless in the family's motel room near Children's Hospital. Lucas has a rare blood disease that makes him unable to fight infections. Without that protein, even minor scratches can turn into gaping wounds and life-threatening infections. The white blood cells never leave the bloodstream and go to the site of the infection, said Dr. Dennis Hickstein, a professor of medicine at the University of Washington and LAD expert at the VA Medical Center.
Simple wounds can take months to heal, often requiring painful and disfiguring skin grafts.
Lucas was diagnosed at age 1 after a mysterious fever put him in the hospital for two months. At first doctors thought he had leukemia, but a chance encounter with a doctor from the University of Tennessee revealed the rare diagnosis. At the time, there were only 100 known cases of the disease worldwide, and doctors knew almost nothing about it. Over the years, infections have put Lucas in the hospital for weeks at a time, every other month or so, she said. But we try to let him lead as normal a life as we can.