This story from Bart Fisher, founder of AAMDS hits close to home. He also happens to live in Virginia and one of the reasons I accepted the invitation to join the board.
In 1983, our 7-year-old son Ivan started bruising easily. Everything he came into contact with seemed to leave its mark on him. A blood test revealed that his blood cells were disastrously low in all categories. For some reason, Ivan’s bone marrow had stopped working.
When our doctors told us that Ivan didn’t have leukemia, but instead had aplastic anemia, we were relieved. Feeling that our son had been spared a fatal form of cancer, our relief was based on ignorance. Even back in 1983, leukemia, especially in children, was treatable and frequently curable. Aplastic anemia, a much less well-known disease, was more lethal.
In 1983, there was no unrelated marrow donor registry in the United States, and the only treatment available failed to cure him.
Ivan’s best hope for a cure was a bone marrow transplant from a sibling with a matching tissue type, but his only brother Ross was not a match. There was no unrelated marrow donor registry in the United States, and the only treatment available to him failed to cure him.
Ivan died just over three months after his diagnosis.
After Ivan’s death, we established what is now the Aplastic Anemia and MDS International Foundation, and worked with Congress to establish a bone marrow registry in the United States. More than 80,000 life-saving transplants have taken place as a result of matches obtained through the registry, and more than 6,200 Americans will receive bone marrow transplants this year.
There have been many advances in medicine since 1984. However, bone marrow failure is still often fatal, and we are still searching for better treatments and a cure.
Bart S. Fisher and Margaret Fisher