The overarching medical challenge that Fanconi patients face is a failure of their bone marrow to produce blood cells. In addition, Fanconi patients normally are born with a variety of birth defects. Henry was born with an extra thumb and a serious heart defect. Surprisingly, these defects are actually on the mild side for FA. An alert and experienced geneticist at Children's Hospital in Washington, DC, was able to piece together Henry's maladies and present us with a diagnosis of Fanconi anemia when Henry was 10 days old. Many kids have much more severe skeletal and organ abnormalities than Henry. For instance, 90% of the Jewish children born with Fanconi's have no thumbs at all. A good number of Fanconi patients have kidney problems, trouble with their eyes, developmental retardation and other serious defects.

Because of the failure of the components of the blood - white and red blood cells and platelets - the body cannot successfully combat infection, fatigue or spontaneous hemorrhage or bleeding. Bone marrow transplantation is the accepted treatment to repair the hematological problems associated with FA. Henry underwent a bone marrow transplant on July 6, 2000 from an anonymous donor who registered with the National Marrow Donor Program. Despite encountering numerous challenges, Henry's marrow has been entirely repopulated with cells from his donor. Although Henry appears to have conquered his significant hematologic troubles, he still has the defective Fanconi gene in every cell in his body and faces an increased risk of acquiring cancer and other serious health problems throughout his lifetime. Only research advances and improved medical treatments can help him and others with this disease live a long and healthy life.

The Fanconi Anemia Research Fund, an organization devoted to finding effective treatments and a cure for Fanconi anemia, and to provide education and support services to affected families worldwide

Fanconi Anemia: A Handbook for Families and Their Physicians, by Lynn and Dave Frohnmayer

Hackensack University Medical Center's Tomorrow Children's Institute (TCI) Bone Marrow Failure Program is where Henry is treated by its unmatched multidisciplinary team of doctors, nurses, social workers and child life specialists

Henry's primary care at TCI is supervised by the brilliant and caring Alfred P. Gillio, MD

Arleen Auerbach, preeminent Fanconi anemia researcher, and head of the International Fanconi Anemia Registry (IFAR)

Jewish Genetic Diseases

Henry's hand surgeon at Children's Hospital Boston, Joseph Upton, who has treated many Fanconi patients. For years, Children's Hospital Boston has been rated the best hospital specializing in pediatric care in the nation, according to a survey by U.S. News & World Report.