TALLAHASSEE (AP) - Florida State football coach Jimbo Fisher and his wife Candi said Friday they have started a fundraising organization to raise money to help their youngest son and others fight a rare life-threatening blood disease.
Six-year-old Ethan Fisher was diagnosed with Fanconi anemia earlier this year and his treatment, which will require a bone marrow transplant in a few years, is being handled by Dr. Margaret MacMillan. She is a pediatric blood and marrow transplant physician at the University of Minnesota. Children are generally diagnosed at age 7 and require the transplant by 11, MacMillan said.
"The good thing for Ethan is he's very healthy right now," MacMillan said.
The disease was initially diagnosed at Shands Hospital in Gainesville and the Fishers began their search to find where work was being done on Fanconi anemia.
"I thought when we arrived in Minnesota we had a death sentence," said Candi Fisher, who will head the Kidz 1st Fund to raise money through the sale of t-shirts, wristbands and online donations. Her husband said he will donate all fees from public speaking appearances to the fund.
Once considered untreatable, the hereditary illness affects roughly one of every 300,000 people. Because the disease is so rare, it has been hard for researchers to obtain federal grants to help them in pursuit of a cure.
MacMillan and the Fishers want to change that.
"We are in this to win the fight against Fanconi anemia on behalf of all the children who share this struggle with Ethan," the second-year Florida State coach said Friday. "We're her to find a cure."
MacMillan said the survival rate after an unrelated donor bone marrow transplant has increased from less than 30 percent to more than 80 percent in the last 15 years.
"Our goal is nothing short of 100 percent survival," she said.
Survival rates for Fanconi anemia patients have dramatically improved in recent years, but the disorder also heightens the chance of an individual being afflicted with cancer or leukemia later in life.
Ethan and his 10-year-old brother, Trey, were both at the school and posed for photos with their mom and prior to the start of the news conference. Trey has been screened, but does not have the disease, MacMillan said.