Jimbo and Candi Fisher have inspired thousands to open their wallets in response to the heart-wrenching story of their younger son's rare, incurable illness.
They also have captured the interest of a Florida State University graduate who has created a character coping with the disease, Fanconi anemia (FA), in her latest novel.
Shannon O'Neil, who earned a master's in sports administration at FSU in 2008, was developing the storyline for what would become "Killer Shine" when the Fishers held a press conference in August 2011 to promote their foundation, Kidz1stFund, designed to raise money for developing a cure for FA — not to mention awareness of the disease.
"I was moved by their story. I couldn't imagine your son facing a disorder that has no cure," O'Neil said. "I wanted to help, I wanted to do more."
FA is a genetic disorder that affects about one in 131,000 children in the United States. The average life expectancy for people with FA is 29 years.
O'Neil realized early on that she didn't know much about FA beyond what the Fishers have shared during their public appearances, so she reached out to Candi Fisher, the wife of FSU's celebrated football coach, to see if she would be able to review her descriptions of FA.
Candi accepted the offer and doubled down on it. She advised O'Neil, helped her tweak some paragraphs, and then wrote an introduction to "Killer Shine."
"FA is so complex. Unless you're on the frontlines of this disease, it's hard to understand all of the things that come along with this illness," Candi Fisher said. "Parents of children are very sensitive to make sure it's described right."
"Killer Shine" is a murder mystery that O'Neil tried to infuse with a wry, Carl Hiaasen-like voice. It's set in a fictitious place resembling Amelia Island, and features a single-mom protagonist with a son with FA.
It is the 29-year-old O'Neil's third book. She also has a full-time job as coordinator for the St. Augustine Lighthouse and Museum. The self-published "Killer Shine" is available on Amazon as a paperback or on Kindle. O'Neil said a portion of her earnings are targeted for Kids1stFund.
The Fishers' foundation has raised more than $1.8 million since August 2011, money that is earmarked for University of Minnesota Amplatz Children's Hospital, an institution that specializes in treating FA patients.
FA can be a bewildering, deceptive disease. Fisher said that Ethan, who turned 9 earlier this month, looks "perfectly normal," even if he is small for his age.
"To the lay person, it doesn't look like there's anything wrong with him," she said. "It all ends the same way, but it can start in different ways. Lots of parents have been fighting battles with FA since their child was born."
The Fishers are encouraged that Ethan is doing as well as he is. When he was 6, the doctors told them to prepare for a bone marrow transplant within 3-5 years. But his condition remains unchanged, she said.
"We try to live life like it's not there, but it's there and we can't pretend it isn't," Candi said. "The doctors have told us, 'Let him be a normal kid,' and that's what we've done. We only answer the questions he asks. We don't tell him what he doesn't need to know."
To learn more about Fanconi anemia or to donate to the Fishers' foundation, go towww.kidz1stfund.com