A simple blood test, in conjunction with a flu diagnosis, was a blessing in disguise for 5-year-old Ethan Fisher.
Fortunately, the hematologist who followed up on Ethan’s low platelet count recognized the possibility of a Fanconi anemia (FA) diagnosis and ordered tests. Sure enough, despite the rarity of this hereditary anemia, Ethan had it—meaning he would need regular blood tests and, eventually, a bone marrow transplant.
Parents Candi and Jimbo Fisher (he’s head football coach of national champions the Florida State University Seminoles) began looking for information, and everything they read pointed them to the Fanconi Anemia Comprehensive Care Program at University of Minnesota Children’s Hospital, the country’s single largest FA treatment center. “Just weeks later, we met Margy and had hope for the first time,” says Candi. “Margy” is world-renowned FA expert Margaret MacMillan, M.D. Fortunately, Ethan didn’t have any congenital anomalies that often accompany FA and, today, three years later, Ethan doesn’t need a transplant yet.
Meanwhile, five months after Ethan’s diagnosis, the couple founded a nonprofit that funds University of Minnesota FA research. So far, Kidz1stFund has donated more than $1.8 million, doubling the U of M’s annual budget for FA research. “We’re affecting change, and it’s not just for Ethan,” says Candi. “It’s for all the children with FA.” Plus, FA findings may lead to new treatments for leukemia, breast cancer, and other diseases.
These days, Ethan has blood tests every three months and, once a year, a bone marrow biopsy at the U of M’s Children’s Hospital to ensure “he’s holding strong.”
Strong he is. Nine-year-old Ethan plays baseball, tennis, and golf. And like his community-minded parents, Ethan is a giver, holding lemonade sales to raise money for Kidz1stFund.