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August 5, 2011

Ethan Fisher, 6, diagnosed with rare blood disorder

In his 20 years of coaching, no postgame press conference could have prepared Florida State's Jimbo Fisher for Friday morning.

He stepped to the podium and spoke about life and his son, about what matters and fighting battles and finding a way. As his wife Candi Fisher spoke and cried, he gripped her shoulder as his own tears rolled.

On this day, he wasn't the face of FSU football. He was just Dad.

During an emotional conference with family, friends, media and current players in attendance, Fisher and Candi revealed that their 6-year-old son Ethan is suffering from a rare blood disorder called Fanconi anemia. The life-threatening disease affects about one in every 300,000 children.

"I'm here (Friday) not as the head football coach at Florida State but as a husband and a father," Fisher said. "As much as I love Florida State, that's the biggest role I have.

"This disease will not define our family. We will go at it every day."

When Ethan caught the flu and visited an urgent care center around Christmas time, the doctors noticed that his blood platelet count was abnormally low. When that number never recovered after the virus was gone, testing continued until the family received Ethan's Fanconi anemia diagnosis at Shands Hospital in Gainesville on March 28.

"It's not something you ever want to hear," Candi Fisher said.

The family then brought Ethan to Dr. Margaret MacMillan, a Fanconi anemia expert based at the University of Minnesota. She has handled Ethan's treatment since and will continue to serve as his lead physician. McMillan said that Ethan will need to have a bone marrow transplant at some point - the average age at time of transplant is about 11 - but until his bone marrow begins to fail, he will live a normal life with no significant treatment. Without a transplant, patients with Fanconi anemia can die by age 25 or 30.

"Our relationship with the Fisher family is just beginning," McMillan said. "I am honored to be a member of the passionate and committed Fisher team as they travel this journey together."

Even with the transplant, McMillan said that cancer rates increase significantly moving forward with Fanconi anemia patients.

Despite a 25 percent chance of also having the disorder, the Fisher's oldest son Trey, 10, was given a clean bill of health. On average, children are diagnosed with the disease at age 7.

During the conference, the Fisher family also announced the launch of their Kidz 1st Fund, which will benefit Fanconi anemia research. They also urged people to join the National Marrow Donor Registry, which helps match patients needing a transplant with suitable donors.

"I am just so impressed with (the Fisher family)," MacMillan said. "I didn't even know who they were from up there in Minneapolis and I'm just impressed and continue to be. They are so courageous to be doing this. It's incredible."

"God has given us this platform, we can find a cure no doubt, and we're on a quest for a cure," Jimbo said. "I've got a big job ahead of me this fall being the head football coach at Florida State. And what this (foundation) has done is given me some relief to allow me to do my job here. The way I have to look at it is the more success we have at Florida State, the greater we grow this program, the more awareness we can bring to this disease.

"We as a society, sometimes we glorify athletes and coaches and make them gods. It's a thing we all joke about sometimes, athletes and coaches when you write all those good things about us - we're not curing cancer. To me, those are the heroes of the world. But, maybe we can. Maybe bringing awareness to this through my job, maybe we can do this and we can beat it."

For more information on the Jimbo and Candi Fisher Kidz 1st Fund, visit www.kidz1stfund.com. You can also follow it on Twitter at @Kidz1stfund and find it on Facebook.





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