Kendall and Taylor were the youngest of our 4 children. At the ages of 7 and 3, respectively, they were diagnosed with Fanconi anemia (FA). Their diagnosis was an agonizing blow which led to a whirlwind of uncertainty, information gathering, and decision making. Our lives were forever changed.
We learned that the only cure for the bone marrow failure that had already begun in them was a bone marrow transplant. In 1991 committed friends rallied the city of Denver to turn out for two huge bone marrow drives which tested over 4,000 people.
Though no match was found for Kendall and Taylor, several people became bone marrow donors for others searching. For the next several years Kendall and Taylor were able to sustain their blood counts by taking a medication which stimulated the production of cells in their marrow, while the search continued for a suitable bone marrow donor. While sustaining their lives, the drug had significant negative side effects. Eventually, it became ineffective.
Kendall was a sophomore in college when, in 2004, constant blood transfusions and increasing bouts of illness led her to make the difficult and courageous decision to leave college and to proceed with a transplant in Minnesota.
She went with the hope of extending her life and fulfilling her dreams. There was still no matched donor among all the many thousands of people listed on the national and international bone marrow registries, so Kendall was to proceed with an unrelated mismatched donor transplant. Transplant day was filled with hope. Tragically, the transplant protocol proved toxic for her and despite all heroic efforts to save her, Kendall died 4 weeks after receiving her donor marrow. Click here to read about Kendall's Transplant Journey.
By that time, Taylor too had become dependent on blood and platelet transfusions to sustain his life. He continued to press on and enjoy every minute of his junior year in high school, despite the interruptions caused by necessary medical interventions for spontaneous bleeding, infections, etc.
In May 2005 we left home and headed to transplant once again. Taylor tolerated the rigors of transplant amazingly well and was discharged from Memorial Sloan Kettering Hospital in New York after 32 days. We stayed near our transplant center, as required, for monitoring and follow-up.
At 106 days post transplant Taylor presented with graft vs. host disease, in which the donor cells were attacking his own cells. This turn would eventually prove devastating. After a long, painful and hard-fought battle by both our dear Taylor and the extraordinary medical team, Taylor died 9 months after transplant. Click here to read about Taylor's Transplant Journey