Name: Kevin
Age: 6 years
Diagnosis: X-linked agammaglobulinemia
Home State: Pennsylvania
Kevin was found to have X-linked gammaglobulinemia when he was 8 months old after developing a series of infections throughout his body, including meningitis. His local doctor sent him to a hospital in Philadelphia where his condition was diagnosed and stabilized. The doctors there suggested a new research study to Kevin's parents that was taking place at St. Jude Children,s Research Hospital. They then brought him to Memphis, where he was immediately enrolled in a study that helped to regulate the disease.
X-linked agammaglobulinemia is a rare, potentially fatal immune disorder that affects boys. This genetic disease prevents the production of mature B cells and plasma cells -- the cells that make the antibodies that circulate throughout the body looking for invaders. When the antibodies locate a target, the immune system attacks and kills the infectious agent. Without antibodies, the infections can't be fought.
St. Jude is the world's largest center for the diagnosis and treatment of agammaglobulinemia, which affects one in 100,000 people. About 20 children come to St. Jude for treatments each year; 180 children from around the world, including Thailand, Croatia, Israel, Brazil and Turkey are enrolled in St. Jude research studies of the disease.
Kevin now receives gammaglobulin infusions once a month at his local hospital. This St. Jude protocol, like many others, allows for the family to be at home while still enrolled in specific research studies. Kevin returns to St. Jude twice a year for follow-up testing. He lives the life of most other 6-year-olds, enjoying kindergarten with his classmates, spending time on the computer and playing with his Hot Wheels collection. Kevin also believes he's part Power Ranger, which certainly keeps his parents on their toes.
