Fisher: 6-year-old fighting rare blood disease

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.

Both parents also asked people to join the National Marrow Donor

Registry during an emotional half-hour news conference.

”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 in pursuit of 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 Friday. ”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, 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 to have the flu.

Bone marrow transplants may also be recommended for people who

suffer from certain type 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.

www.kidz1stfund.com