FANCONI ANEMIA
Fanconi Anemia (FA) is a rare, genetic disease. Most patients develop bone marrow failure in childhood, and many eventually develop leukemia at a very early age. FA patients are extremely likely to develop head and neck, gynecological, and/or gastrointestinal cancer and at a much earlier age than non-FA cancer patients.
Fanconi anemia can affect all systems of the body. Over 50% of FA patients are born with abnormalities of the hands and arms, such as a missing bone in the forearm or missing thumbs.
Many have kidney malformations, hearing problems, gastrointestinal problems, and short stature. Other FA patients have no outward signs of the disease, but still suffer the potentially fatal bone marrow failure and may require a bone marrow transplant in childhood or young adulthood.
BACKGROUND
Will Bloxom is a 14-year-old from Salisbury, MD who suffers from a rare genetic disease called Fanconi Anemia. His parents are Randy and Nancy Powell Bloxom. Will is the nephew of Keith & Hattie Sue Widdowson, Glenn Powell, Cindy Cole, Dick & Irene Carey, and Jerry Wayne & Carolyn Senter. He is the grandson of Serena Bozman Parsons & the late Ronald Powell, and the late Pep & Etta Bloxom.
When Will was five, he began to suffer from repeated infections. At this time, his family discovered how sick he really was. The news was devastating. Will had FA. His bone marrow was failing. Neither Will's parents, nor his younger sister, Bonnie Sue, were suitable bone marrow donors for Will. At the time of diagnosis, Will's chances of surviving an unrelated bone marrow transplant stood at less than 25%. In the eight years since, thanks in large part to research funded by the Fanconi Anemia Research Fund (FARF), unrelated bone marrow transplant survival rates for standard risk FA patients like Will have risen to around 80%. The FARF also sponsors several family meetings each year that have afforded the family the opportunity to meet with specialists throughout the United States to ensure that Will has the best care possible. The meetings also provide the family the opportunity to talk with other families whose children have this same rare disease.
Will leads a somewhat normal life. He loves to play XBox and other video games. In the summertime, he enjoys boating, fishing and boogie boarding. When his health permits, he loves to play paintball. However, he is unable to play any contact sports. His blood counts must be monitored on a regular basis. Any fevers warrant an immediate trip to the hospital for a course of intravenous antibiotics.
THE FUTURE
Will's bone marrow has gradually declined to reach a critical point. Because of this, Will's bone marrow transplant is scheduled for spring 2006. The transplant will take place at Memorial Sloan Kettering Cancer Center in New York City. Will and his family will be gone for at least 6 months. Beyond transplant, Will faces many other serious health issues. His best chance for overcoming these obstacles lies through the research sponsored by the Fanconi Anemia Research Fund.
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