As Florida State head coach Jimbo Fisher prepares for the biggest battle of his coaching life, he and his wife, Candi, are opening up on the biggest battle they face off the field.
In 2011, the couple's youngest son, Ethan, was diagnosed with a disease called Fanconi anemia, a rare blood disorder that can cause bone-marrow failure, leukemia and tumors, according to Fanconi.org. The average lifespan of someone suffering from the disease is between 28 and 30 years.
“That moment will always be pivotal in our family,” Candi Fisher said of her son's diagnosis, per USA Today's Laken Litman. “I don’t think we take things for granted like we used to. We cherish a lot more.”
Although the number of documented patients is unclear, the chances of a child suffering from the recessive disease are about 1-in-131,000. Only 31 children each year on average are diagnosed with the condition in the United States.
Ethan, who was five years old at the time of his diagnosis and is now eight, undergoes quarterly blood tests at University of Amplatz Children’s Hospital in Minneapolis to check on the progression of the disease. He is also subject to yearly bone-marrow checks. Although there is no known cure at this time, the continuous testing is meant to identify any concerns and put him on a possible transplant list if needed.
Doctors estimated that Ethan would need a transplant within three to five years of his diagnosis, per CNN's Jacque Wilson.
FA, which causes numerous problems throughout the body, causes at least one physical abnormality in 60 percent of patients. The most common among those is a short stature, as children suffering from FA often look years younger than others their age. Other conditions include learning disabilities, extra extremities and defects in heart tissues. Ethan shows no outward signs of FA.
“The hardest part is knowing that it’s a waiting game,” Candi said. “We know that we can never ever let our guard down. We know that we can never relax. It’s always in the back of your mind, knowing this blood test day could be the day they say his numbers are dropping.”
Jimbo Fisher, whose Seminoles play for the BCS National Championship against Auburn on Jan. 6, has worked particularly hard to balance out home and coaching life since the diagnosis. Ethan is a regular fixture in the Florida State locker room, hanging with the players and coaches. Per Wilson, every player has signed up for the bone-marrow donor registry.
After learning of Ethan's disease, Candi founded the Kidz1stFund, which has already raised nearly $2 million since 2011. The organization works with afflicted families to help raise awareness and find a cure for the condition. In September, Florida State and Pittsburgh wore decals on their helmets with the Kidz1stFund's slogan, "I fight Fanconi," in an effort to raise awareness.
Despite being hours away from a possible national title, Jimbo sounds more like a coach when discussing how his family plans to defeat FA than he does talking about Seminoles players.
“We accepted it in that God doesn’t put more on your plate than you can handle,” Jimbo said. “Everybody has issues in their life and we know this is a very serious one, but life goes on. It’s not going to control us. We’re going to control it. We look at it like an opponent. We’re gonna beat it.”
Doctors say that, while the odds are stacked against a cure, they're getting better. Dr. Margaret MacMillan, a hematologist oncologist at the hospital where Ethan receives his treatment, noted that bone-marrow-surgery survival rates have jumped by 65 percent over the past 16 years. That's not necessarily enough to cure a degenerative disease, but it can go a long way in starting to expand the lifespans of those afflicted with FA.
Until then, Fisher seems determined to use his triumphs on the field to help his son have one off of it.
"I love what I do," Fisher said, per Wilson. "The more success I have, the more awareness I can bring to this disease."
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