It was a beautiful but humid Sunday night in Pinehurst, N.C., and the pastoral Carolina Inn was abuzz because the ACC preseason football meetings were under way. Things were starting to wind down after dinner when I reached out to Jimbo Fisher, Florida State's head coach. I've known Fisher since he came to Auburn with Terry Bowden in 1993. I knew I could be candid with him.
I told him I wanted to talk about his quarterback, E.J. Manuel, but that I also wanted to talk about Ethan, his 6-year-old son, who many of us knew was having health problems. I wasn't sure how he would respond.
|Jimbo Fisher and his wife spent last winter waiting for word on their son. Now FSU's coach is ready to talk. (Getty Images)|
Jimbo Fisher wasn't ready to go public with Ethan's story. He had promised his wife, Candi, that he would wait until an Aug. 5 news conference in Tallahassee in order to answer all the questions and hopefully bring as much attention as possible to the disease.
But on that night in the Sandhills of North Carolina, Fisher did want to talk about it. After four months of doctors, hospitals, tests, and more tears that he could possibly count, the man whose professional dreams were all coming true wanted to talk about his family, their unexpected journey and what happens next.
"I'll tell you this," he said. "It sure makes you appreciate what's important in life."
The disease has a name. Fanconi enemia was discovered by Swiss pediatrician Guido Fanconi in 1927. It is a genetic bone marrow disorder so rare than only 1 in 350,000 children born come down with the symptoms. It's so rare because both parents have to be carriers and even then, only 25 percent of their children contract FA.
It was Christmas. Candi was visiting relatives in Alabama with their two boys, Ethan and Trey. Jimbo was getting Florida State ready to play South Carolina in the Chick-fil-A Bowl. Ethan was sick with flu-like symptoms.
"Candi just took him to a local urgent care place and the doctor there decided he was going to do a CBC [Complete Blood Count]," Fisher said. "Thank God he did."
The doctor in Alabama didn't like the low blood platelet levels but it wasn't rare for a child with the flu. Keep checking them when you get back home, he told Candi Fisher.
"They checked him in January and they didn't go up," Fisher said. "They checked them again the next month and they still didn't go up."
Then came a trip to the highly regarded Shands Hospital at the University of Florida in Gainesville, where there were more tests. They thought it might be leukemia. It wasn't. On Monday, March 28, the diagnosis came and the journey began.
Jimbo and Candi Fisher have learned a lot in the past four months, thanks to people like Dr. Margaret MacMillan at the Amplatz Children's Hospital in Minneapolis.
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They have learned that sometime in the next three to five years, Ethan is going to need a bone marrow transplant. A match will have to be found. They learned, however, that Trey is not a match. Bone marrow matches with siblings have a higher rate of success, but the success numbers for non-sibling matches are going up.
They learned there is research into cord blood and that the stem cells from that blood could be an option for Ethan.
They learned that they are not alone. The daughter of Virginia coach Mike London, Ticynn, was diagnosed with Fanconi enemia when she was 4 years old. She received a bone marrow transplant from her father (it's rare when a parent is a match) in 2003 and today is doing well. Mike London reached out to share that story.
"It was good to get that phone call," Fisher said.
But there are also stories that give the Fishers pause. Former Oregon President Dave Frohnmayer and his wife, Lynn, have had three daughters struck by the disease. Katie Frohnmayer died in 1991 at age 12. Kirsten died in 1997, two years after graduating from Stanford. But there is hope in the tragic story of this family: Amy Frohnmayer is now 24, a graduate of Stanford, and works at an Oregon hospital as a researcher and lecturer on adults living with FA.
In one of her recent lectures Amy Frohnmayer said: "I would tell them to try to integrate it [FA] into their life and to carry it along with them in their back pocket, wherever they go, but to keep on keeping on ..."
All of the stories of both sadness and hope can collectively be overwhelming at times, Fisher said. And Fisher also knows that his family is more fortunate than others dealing with FA. They have the financial means to create a support system that, if necessary, could take care of Ethan for the rest of his life. Many families don't have the funds just to get to Minneapolis to see the best doctors.
"What we finally decided was that we had to roll up our sleeves and do something to help," Fisher said. "We could sit back and feel sorry for our family or we could try to find a cure."
The Fishers have established the Kidz 1st Fun (Kidz1stFund.com) to raise funds for research. They also want to bring awareness to the National Marrow Donor Program (Marrow.org) because when Ethan finally needs a transplant that is where they will likely find a match.
For now, Ethan will get regular blood tests to monitor his condition. Some day he will have to go to Minnesota and spend at least three to five months for the transplant and recovery. Until that day comes, the Fishers will just keep living their lives.
"As a head football coach I have a platform and we're going to use it," Fisher said. "We don't know what's going to happen in the future. But we have a plan and we have hope. Every day they are learning something new about this disease and how to manage it. There is going to be a cure someday. We just want to accelerate the process."
To contribute to the Kidz 1st Fund go to Kidz1stFund.com. To learn more about the "Be The Match" National Bone Marrow Program go to Marrow.org.
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