Rachel Miller (pictured with mom Diane, Dad Rob and brother Robby), is alive today because of the generosity of blood donors and a bone marrow donor from Wisconsin. When she was just a year old, Rachel was diagnosed with Familial Erythrophagocytic Lymphohistiocytosis (FEL), a rare and deadly disease in which the cells that eat up dead cells in your body turn on your healthy cells as well. Rachel’s cells were eating her alive. While waiting for her bone marrow transplant, Rachel needed over 220 units of whole blood and platelets to keep her alive. No one in Rachel’s family was a close enough bone marrow match so her doctor turned to the National Marrow Donor Program Registry. Before her second birthday, Rachel and her family traveled to Minnesota Children’s Hospital where she was only the fifth child with FEL who was treated by means of a bone marrow transplant.
A year after her transplant, Rachel’s donor contacted her family (regulations forbade contact until one-year after the procedure). He lives in Wisconsin and treats Rachel like a granddaughter. The families have become close.
Rachel is an active 10-year old with few restrictions. Her body doesn’t produce enough platelets for clotting so she bruises easily and doesn’t play any contact sports. “But,” says her mother Diane, ”we can’t keep her down! We are truly blessed.”
Patient Stories