Some time this weekend before their teams line up in Tallahassee, Fla., on Saturday night, Virginia's Mike London and Florida State's Jimbo Fisher and their families will meet and explore a bond that extends far beyond football — the health of children.
The Londons and Fishers each have a child with the same rare genetic disease, a blood disorder called Fanconi anemia that can lead to cancers and is often fatal if undiagnosed and untreated. Patients eventually require a bone marrow transplant from a matching donor and must be monitored the rest of their lives.
Saturday's nationally-televised game provides an opportunity to inform and educate, as well as a call to action. The families filmed a joint public service announcement that will air during the game, and there will be a bone marrow registration drive near the stadium, as there has been at all Seminoles' home games this season.
"It's something that we're adjusting to daily, but we've gotten in a routine," Fisher said. "It's kind of put things in perspective for us, my family very much so, but also understand that it doesn't define us. There's a lot of folks out there that are dealing with a lot of adversity in their life. Life does go on. Life doesn't wait for anything. It definitely doesn't wait for football. You have to deal with it. How you handle those situations, I think, that define you and the impact you can have not only on your own child's life, but maybe helping some other child or some other person that, if you can help beat that disease, help them do it, and we learn more about it. I think that's what defines us as people."
London said he first learned of the Fishers' plight last summer when Fisher was conspicuously absent at ACC coaches' meetings. London's friend and fellow coach Tom O'Brien said that Fisher was in Minnesota, where his son was being examined for a rare disease.
O'Brien was unsure of the condition and tried to fudge through its name. London recognized immediately. He reached out to Fisher and offered support in any manner possible.
"We're not relatively close, but we're in the same profession," London said. "I have a tremendous amount of respect for him. Any time you're with a family member or a friend when they're first diagnosed, you want the comfort of somebody being able to put their arm around you, pat you on the back, tell you it's going to be all right.
"I think because we have been through the whole process, every time your son or daughter gets sick with a cold, you're frantic because you know what that could lead to. We talked about different things that we did, that we experienced, and that they're going through. That provided them a sense of comfort, a sense of understanding. They know that our phones are always open. We're always available."
Fisher not only appreciated London's outreach, but was stunned that a colleague within the same conference was touched by a disease that occurs only in 1 of every 131,000 births in the U.S., according to research.
"There've been a lot of families, Mike's family, but many other families that have reached out to us that are dealing with it and how they dealt with it and the circumstances that went with it have been very inspirational," Fisher said. "Any time you see a success story and that things continue to go well, because that's the thing about the disease — it's not just the (bone marrow) transplant. The disease never leaves you. It's the things that occur after the transplant. What we're trying to really find with our cure … is to eliminate a lot of problems down the road. That's the thing we're fighting for. Not only the transplant but the long-term effects of things."
Jimbo and Candi Fisher last summer started a foundation, OnaKwest for a Cure, to fight Fanconi anemia. The foundation's fund-raising arm is called the Kidz1st Fund. Early results and support are encouraging.
"Being a football coach is only part of the role we should have," Fisher said. "God put us on this earth for a lot of reasons. He puts things in your place for a lot of reasons. Sometimes we don't understand. I didn't, and I still don't. But hey, that's part of life. A lot of folks out there have a lot worse things in front of them. How we handle it I think will help Ethan and help other folks in the future and that's why we started Kidz1st."
Fanconi anemia is sometimes detected at birth, but can go years without being diagnosed. Physical symptoms can include low birth weight, missing or mis-shapen thumbs or fingers, skin discoloration, skeletal issues of the hips, spine or ribs.
Ticynn London, for example, had some skin discoloration and when she was born, her left thumb was simply a fold of skin without a bone. Colds and other routine childhood illnesses lingered. The disease eventually compromises the body's immune system, and patients are susceptible to leukemia and other cancers at early ages.
The Londons caught a break in Ticynn's treatment in 2003. Mike was a close enough match that he could donate bone marrow, unusual because a child's DNA is typically a combination of both parents, which often eliminates them as donors.
Ticynn's situation inspired the Londons to work on bone marrow registry drives. He did so as an assistant coach at Virginia, then as head coach at Richmond, and since he returned to U.Va. as head coach.
Two Virginia players were matches. Walk-on linebacker Trevor Grywatch last October donated stem cells that helped save the life of a 60-year-old man. Former U.Va. defensive tackle Hunter Steward, who has since transferred to Liberty, was found to be a match, but was not selected as a donor.
University student Joel Loeshelle was found to be a match and donated bone marrow this year.
"Coach Fisher and his wife rekindled an inspiration in myself and my wife, Regina," London said, "to get back in the forefront of trying to use our resources — this platform and its opportunities — to raise the awareness out there among people who may want to get involved."
London said that he and Regina and Ticynn are in the planning stages of starting their own foundation related to bone marrow registry.
Ticynn just completed volleyball season at St. Anne's Belfield and leads a normal teenager's life, London said, though she must be examined and tested periodically. Even after successful bone marrow transplants that cure blood problems, older FA patients still are susceptible to certain cancers.
"Using the opportunity and the platform that both of us have been provided," London said, "not only to talk about our own children but other people's children, other people's loved ones, friends, whatever it may be, it makes the cause well worth it."
Children's rare disease links U.Va.'s London, Seminoles' Fisher beyond football
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