TALLAHASSEE, Fla. -- Florida State football coach Jimbo Fisher and his wife Candi have started a fundraising organization to raise money to help their youngest son and others fight a rare life-threatening blood disease.
Both parents also asked people to join the National Marrow Donor Registry during an emotional half-hour news conference this past Friday.
"There are so many people out there who need bone marrow transplants who can't find the right match," Candi Fisher said. "That's something that you can do to help us."
With a large university auditorium room crowded with friends, media and many Seminole players, the Fishers said 6-year-old Ethan suffers from Fanconi anemia and will eventually require a bone marrow transplant.
Once considered untreatable, the recessive gene disorder 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 pursue a cure.
But Ethan's specialist, Dr. Margaret 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. "We're here to find a cure."
Ethan and his 10-year-old brother, Trey, posed for photos with their parents prior to the start of the news conference, but did not stay for the announcement. Trey has been screened and does not have the disease.
Fisher said dealing with Ethan's illness, diagnosed March 28 at Shands Hospital in Gainesville, has been the most difficult thing he's faced.
"The unknown was the greatest fear," he said. "You have to know whether it's good, bad or indifferent so you can get a plan of attack. Then you get everything together and go after it."
Candi Fisher, who will head the Kidz 1st Fund, will work to raise money through the sale of T-shirts, wristbands and online donations. Jimbo Fisher said he will donate all fees from public speaking appearances to the fund.
Nick Saban, who was Fisher's boss at LSU a decade ago, was among the first to contribute to the Fishers' newly created foundation.
"When it comes to relationships, they're way more important than playing football games," Saban said.
Roughly 1,000 children in the U.S. have the disorder, which is frequently discovered when a child is suspected of having the flu. Bone marrow transplants may also be recommended for people who suffer from certain types of cancers, other types of anemia or severe immunodeficiency syndromes.
Florida State assistant baseball coach Mike Martin Jr., who has two sons the same age as Trey and Ethan and is close to their family, said there was never any doubt that Fisher and his wife would get involved in a project to accelerate research into the disease.
"After the initial shock, Jimbo said, 'Watch this, watch us tackle this
one,' " Martin related. "They're going to meet it head on."
The Fishers' battle with the disease led them to the University of Minnesota and MacMillan, a Canadian-born pediatric blood and marrow transplant physician.
MacMillan said children are generally diagnosed with Fanconi anemia around age 7, and the median age for the transplant is 11. 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.
"The good thing for Ethan is he's very healthy right now," MacMillan said.
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.