Florida State's Fisher joins fight for cure of rare blood disorder
TALLAHASSEE, Fla. -- During an interview in Florida State coach Jimbo Fisher's office on National Signing Day in February, Fisher's cell phone wouldn't stop ringing. On a day when the Seminoles landed one of the nation's top classes, the persistent caller wasn't a recruit. As the phone kept ringing, Fisher excused himself and answered.
"Hi Candi," Fisher said. Then he listened. As his wife spoke, Fisher's face drooped. Though only one side of the conversation was audible, Fisher's responses were obvious to anyone who has children. They were the words of a father getting awful news about one of the kids.
I didn't ask Fisher about the conversation at the time. It wasn't any of my business. When Florida State released a statement on April 1 explaining that Fisher's younger son, Ethan, faced a serious health scare, the exchange made a lot more sense. On Friday, Candi Fisher explained that she had called on National Signing Day following another doctor's visit for Ethan. His platelet count still hadn't risen.
The Fishers' nightmare began around Christmas when Candi took Ethan to an urgent care clinic because of the flu. A Complete Blood Count (CBC) test revealed extremely low platelet levels. A low platelet level is common for an acutely ill child, but the doctor advised Candi to follow up to ensure the platelet count rose back to a normal level. It didn't. Finally, after a trip to the University of Florida's Shands Hospital, Ethan was diagnosed with Fanconi anemia, an inherited bone marrow disorder that affects only one in 300,000 children. Ethan is six now. At some point in the future, the Fishers learned, Ethan's bone marrow will fail. He will need a transplant. Fanconi anemia patients who don't receive a bone marrow transplant die before they reach middle age.
Jimbo and Candi sought out an expert on the disease. Their search led them to Dr. Margaret MacMillan at the University of Minnesota's Amplatz Children's Hospital. "I thought when we arrived in Minnesota that we had a death sentence," Candi said. "That was my thinking. She spent hours and hours with us making us feel comfortable with this and encouraging us to fight this."
At first, the Fishers asked for privacy to deal with Ethan's diagnosis. As they learned more about the fight six-year-old Ethan and the other children with Fanconi anemia face, they decided to go public. They established the Kidz 1st Fund to raise money for research into the disease. Jimbo also will donate any fees he receives from public speaking engagements to the fund. What makes Fanconi anemia intriguing, MacMillan said, is that research into the disease might also help provide help for patients with a range of diseases from leukemia to breast cancer. The Fishers want to help fight in any way they can.
"We can stick our head in the sand and hope, or we can try to make something happen," Jimbo said. "I couldn't live with myself if we didn't do everything possible."
Said Candi: "There are people out there who have this disease who don't have a voice and who don't have an audience. That's something we did have."
Ethan and the other children afflicted with Fanconi anemia face a complicated fight. Even if they find a matching donor for a transplant, they aren't guaranteed a full life. MacMillian said Fanconi anemia patients face an increased risk of cancer following their transplants. "Instead of having throat cancer when you're 50 or 60," MacMillan said, "patients with Fanconi anemia can get that when they're 20."
In MacMillan, they found a doctor as unwilling to accept defeat in the lab as Jimbo is on the football field. "The goal is 100 percent cure for these children with a 100 percent survival rate. Anything short of that is unsatisfactory in all of our minds," MacMillan said. "To have that funding is phenomenal. It's very courageous of them to be doing this. A lot of families would choose not to. A lot of families would stick their heads in the sand."
The entire Fisher family has chipped in. Trey, Ethan's 10-year-old brother, usually requires three adults to restrain him for a doctor to administer a shot or draw blood. When he learned he needed to be tested to see if he was a match for Ethan, Trey sat by himself and watched the needle go into his arm. "It told me," Jimbo said, "how much he loves his brother."
Unfortunately, MacMillan said, Trey isn't a match. When the day comes that Ethan needs a donor, the marrow probably will have to come from someone in the National Marrow Donor Program. So along with raising money, the Fishers also will try to raise awareness for the Be The Match Marrow Registry. Who knows? Maybe someone will read an account of Ethan's struggle, visit Marrow.org, sign up for the registry and save the life of a child afflicted with Fanconi anemia or leukemia. All that is required, MacMillan said, is a cheek swab for DNA testing.
Another option for Ethan might be cord blood. MacMillan said doctors have had great results using the stem cells in cord blood -- which doesn't require as precise a genetic match as marrow -- to help Fanconi anemia patients regrow marrow. If anyone reading this is expecting a child, please consider donating your child's cord blood, because cord blood has a wide variety of critical uses. My wife and I elected to donate the cord blood of both our children, and it was a simple, painless process that might eventually save someone's life.
For now, Ethan will live a normal life. "If you watch him in the park, he's the last one you'd think has anything wrong with him," Jimbo said. "He goes 1,000 miles an hour." Candi said Ethan doesn't quite grasp the gravity of his condition, but he will learn.
As the Fishers spoke Friday in Florida State's team meeting room, the Seminoles' offensive goals were displayed on a board high above. As they choked back tears, 28 points a game and 4 yards-per-carry didn't seem so important. But Jimbo believes the Seminoles' success is critical for the quest to raise money to help children with Fanconi anemia. "For us to be successful here and have the national championships win like we all want to do --understand something -- the more we do that, the more of a platform we have," Jimbo said. Fisher's fundraising goal? "Infinite," he said. Jimbo swears he and Candi won't quit until Ethan and the other children in his situation have emerged victorious.
"Our goal is not to prolong life," Jimbo said. "It's to have life. It's a cure. ... This is not just for Ethan. It's for every family that's afflicted with this."