FSU Coach’s Most Bitter Rival? His Son’s Deadly Disease: Fanconi Anemia

Jimbo Fisher’s professional legacy was being formed last night.

By his side: wife Candi, and the couple’s two sons– Trey, 12, and Ethan, 8.

There was a time not long ago when Jimbo, as the head coach to lead the FSU football program back to national prominence— not to mention, Monday’s BCS National Championship Game— would have been a life-altering event for the family.

But such is no longer the case.

That’s because for the last three years the Fishers have dealt with a much harsher reality— one that overrides all other priorities: Ethan’s potentially fatal disease.

Undersized But Otherwise Normal

Athletic and outgoing, Ethan had always been a “typically energetic child,” Candi recalls. “He was just very small for his age.”

While on a family vacation in Candi’s native Alabama during the 2010 holiday season, Ethan developed a mild flu and fever.

“We took him to a local doctor for medication. His blood tests showed that his platelet count was low, so the doctor recommended we follow up with Ethan’s pediatrician when we got back home to Tallahassee,” recalls Candi.

Jimbo and Candi had no way of knowing they’d soon be facing every parent’s worst nightmare.

Though by spring of 2011, Ethan had long been symptom-free, extensive blood testing eventually revealed devastating news: he had a condition known as Fanconi anemia (FA).

What is Fanconi Anemia?

An incurable, inherited, genetic disease usually discovered in early childhood, FA is extremely rare. Only a couple of dozen new cases are diagnosed annually in the U.S.

Essentially, the DNA cells in FA sufferers can’t repair themselves. Patients may present a wide array of symptoms, such as birth defects, skin abnormalities and heart, hearing and kidney issues.

Or, virtually none at all— as is the case with Ethan— save for abnormally low blood counts.

The primary risk for FA patients is bone marrow failure. This usually results in the need for a pre-adulthood bone marrow transplant. However, FA also puts patients at risk for a vast array of other potentially fatal conditions, including exponentially higher incidences of head, neck and other kinds of early-adulthood cancers. Average life expectancy for those with FA who successfully undergo a bone-marrow transplant is between age 20 and 30.

Springing into Action

Once Ethan was diagnosed, the Fishers had little time to spare. There are only two hospitals in the U.S. that specialize in FA (University of Minnesota and University of Cincinnati). They chose the former.

Trey immediately needed to be tested— both for the disease (he was negative) and to see if he’d be a marrow donor match (siblings have the best odds of being marrow matches— 1 in 4; he was not a match).

As that summer wore on, Candi says, “Trey sensed how serious the situation was. One day he asked, ‘Mom, is Ethan going to die?’”

In August 2011, just before the start of FSU’s football season, Jimbo and Candi revealed Ethan’s condition to the public.

They announced the formation of the Kidz1stFund (Kidz1stFund.com) to raise money for FA research, and encouraged all folks to consider entering the national marrow registry (all it takes is a cheek swab).

In a heartwarming scene on campus, the entire FSU football team registered.

(And, while none of the players were a match for Ethan, several have turned out to matches for other patients waiting for bone marrow transplants)

‘Open-Ended’ Situation

“Jimbo and I are ‘fixers’,” Candi explains. “But with FA, there’s no fix. It’s just open-ended.”

Ethan’s blood counts are monitored every couple of months, and he recently started receiving HGH injections to help spur his growth. In addition, every spring— during Jimbo’s off week— the family travels to the University of Minnesota for Ethan to undergo a full work-up (which includes a bone marrow biopsy).

“We make it like a family vacation,” Candi explains. “In between going to hockey games and Mall of America, we take Ethan for his testing.”

Read more at The Palm Beach Post.