It began as a family trip to celebrate Christmas, but little did Candi Fisher know 11 months ago that it was the beginning of the end of normal. • On a fateful day last December in her native Alabama, what seemed like a simple case of a kid with the flu led to a diagnosis that changed her family's life in unimaginable ways. • Doctors discovered Ethan Fisher, the 6-year-old son of Candi and Florida State football coach Jimbo Fisher, has Fanconi Anemia, a rare blood disease inherited from a gene in both parents that decreases production of blood cells and eventually leads to bone marrow failure. Of the more than 4.2 million births in the United States each year, only about 31 are born with the disease. There is no cure, and in three to five years he will need a bone marrow transplant. • The diagnosis devastated the Fishers. • "We were trying to keep the kids from seeing us struggling because we were both struggling," Candi Fisher said, referring to Ethan and his 10-year-old brother, Trey. "There were so many days I would take the kids to school, and then come back home and get in the bed because I couldn't find it in myself to move forward at that point."
After learning all she could about the disease and getting Ethan set up with specialists in Minnesota, what she found in herself was a fierce determination to find a cure for Ethan and all the other children stricken with the disease.
"She meets everything head on, and there was no doubt about this," Jimbo Fisher said. "I mean, it was a shock, because her love for her kids is unbelievable and her commitment to them. But there was no doubt in my mind that she would attack this thing."
The Fishers, who met when they were introduced by mutual friends and have been married 18 years, founded the Kidz 1st Fund, a non-profit group to help raise awareness and money to find a cure. Since September, it has raised nearly $500,000 and far exceeded Candi Fisher's expectations.
"From the very beginning when Ethan first got sick, I thought I've got to do something," she said. "I'm a fixer by nature, I just am. I want to fix it today and I want to move on tomorrow. And this has definitely been one of those things for me where it has taught me that not everything can be handled that way. I wonder if in some way that God's testing me and trying to teach me to have patience and learn that not everything can be fixed. Not everything is going to be fixed immediately."
Trip that changed everything
Candi Fisher and her children were visiting her mother, Suzanne Ballard, in Birmingham during the Christmas holidays last year when Ethan began running a fever and exhibiting flu-like symptoms. Routine tests at a local urgent care facility indicated Ethan's platelet count was unusually low. His mother was told it most likely was due to the virus but she should have Ethan checked when they returned home.
The twice-monthly tests kept coming back abnormal, and the Fishers were referred to doctors at Shands in Gainesville. For about 2½ weeks after the test was administered, the Fishers tried to go about life as usual.
And then came the call on March 28.
Candi Fisher was at home cooking dinner. Jimbo and the boys were out riding around a nearby pond. In hysterics, she went to find them.
"Everything changes," Candi Fisher said. "Everything was different. Life changed at that point. What I thought was important all of a sudden wasn't as important anymore. For awhile it was hard to find the willpower to get out of the house every day. But I had to keep the kids' routine regular. They needed normalcy."
And she needed to make something positive out of the situation. Initially, she and Jimbo struggled with whether to go public. It's hard enough being the son of a coach of a big-time college football team. But they decided it was worth opening themselves up publicly if it meant saving lives.
"We didn't want Ethan to be the poster-child for anything, and I don't mean that to sound terrible …" she said. "I didn't want it to be just another thing that drew even more attention to the kids. But we decided that instead of it being Ethan's battle, it's our family's battle."
When word got out about the foundation, she was contacted by several local individuals who wanted to help. They immediately formed a board that meets once a week, and Fisher travels around the area getting the word out about the disease and fundraising. She would love to take her voice nationwide, but for now she refuses to do anything that takes her away from her children. "My children are my first priority," she said.
Three weeks ago, the Boston College women's ice hockey team presented the Fishers with a $2,500 donation. In addition, many ACC and SEC coaches have privately donated to the foundation. And then there are the other Fanconi anemia families, including Virginia coach Mike London and his wife, Regina, whose daughter Ticynn was diagnosed in 2000 and eventually had a transplant.
"It's something that we had never even heard of, yet now that we're doing all of this, we have met so many people now who are reaching out," Fisher said. "And they are saying my child has this, and thank you for bringing awareness to this."
A mother's love
Suzanne Ballard had grown to love the role of doting grandmother to Ethan and Trey, and was basking in the glow of that unconditional love grandchildren bring without the full responsibility of parenting them. But when Ethan's diagnosis came, her life would be turned around, too. She knew it the moment she heard her daughter's voice on the telephone.
"The moment I heard the pain in her voice, immediately my thoughts went to her," Ballard said. "She couldn't even really get the words out, but I knew. And as much as I love Ethan, which is unbelievable, my thought at that moment, and my pain was for her. Immediately my thought was, 'Oh my gosh, this is my child and she's going to have to go through this.' And what can I do to help her? She will be there for Ethan, Jimbo will be there for Ethan. What can I do to help them? And so it's the mother that took priority then, rather than the grandmother."
Her first priority these days is making sure Candi is okay. She travels back and forth from Birmingham to Tallahassee more often now to provide love and support in any way she can.
"I've always been proud of her, but I have a whole new respect and amazement as I watch her go through her day-to-day," Ballard said. "Unless you're walking in their shoes, you have no idea what they face and deal with every day."
Facing the future
For now, Ethan Fisher is relatively healthy, able to do what any other kid his age can, his mom says. He gets his blood count checked every three months, and a chart is maintained to ensure he remains stable. Doctors are watching for trends, and when the decline begins, he will be closer to marrow failure and the need for a transplant. There is no cure, but the success rate of bone marrow transplants for Fanconi anemia patients has increased from 30 percent to nearly 85 percent over the past 15 years. However, those with the disease are more likely to develop cancer at a significantly higher rate than the general population.
The waiting, wondering, and worrying would be more torturous if not for Candi Fisher's work with the foundation. It's why she's devoting so much time to it now, while Ethan's still healthy. Her biggest concern is keeping the agenda fresh so people will want to continue to help. The way she has managed to balance it all, says Jimbo Fisher, is a testament to her dedication to her family and finding a cure.
"I mean, it's unbelievable what a coach's wife does when everything is perfect, they have to handle the kids, the family, every situation known to man and everything else," Jimbo Fisher said. "But then what she's done chairing this fund, it's been a tremendous burden for her and time consuming, but it's something she is very passionate about and has done a tremendous job, has raised a ton of money, has organized a great deal and doing everything she can do for our son while I'm coaching and trying to do this. …
"It's actually remarkable what all she's taken on, what she does within a day and what she accomplishes. … Her energy level and commitment is unbelievable, and I'm very blessed to have her."
Fear and faith
Faith, friends and family have enabled Candi Fisher to go on. And on those days when doubt and fear creep in, she reminds herself that there's a greater purpose to what her family is enduring.
"I have to believe that we were given this for a reason, otherwise I would be angry," she said. "And yeah, I get angry. I get angry a lot of times. I get angry at the situation, I get upset, I get sad. I have days where it's very difficult to not cry all day long. But for the most part, I've got to believe that God knows what he's doing. … Maybe our son having this will save other people's lives. I have to believe that. Because I can't accept the alternative."
Antonya English can be reached at firstname.lastname@example.org.