FA Heroes

Kendall & Taylor Atkinson

Kendall and Taylor were the youngest of our 4 children. In 1990 at the ages of 7 and 3 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. We were told that without a bone marrow transplant they would not likely live to adulthood.

Our lives were forever changed.

At that time the transplant success rate for children with FA was very poor, plus no suitable donor for Kendall and Taylor was found. They were eventually put on medication that sustained their blood counts for several years, though the side effects were often overwhelming.

Eventually the drug became ineffective.

KENDALL

Kendall was a sophomore in college when 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 2004 at one of the handful of centers that specializes in Fanconi anemia.

She went with the hope of extending her life and fulfilling her dreams. There was still no matched donor found so Kendall was to proceed with an unrelated mismatched donor transplant. We were grateful that research in the years proceeding had dramatically improved transplant outcomes. 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.

TAYLOR

By 2004, Taylor too had become dependent on 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 after 32 days.

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 his transplant.