Fisher’s son is giving hope to thousands with rare disease
COLLEGE STATION — Ethan Fisher, a freshman kicker at his Florida high school, began listing the sports he enjoys playing for fun — before the list grew too long.
“Lacrosse, football, baseball, basketball …” Ethan said. “Really, everything.”
The reality that Ethan, a vibrant teenager who turned 16 on Monday, is able to enjoy sports — and most importantly enjoy life — causes his father’s eyes to well with tears of joy.
“The word hope is the greatest word in our vocabulary,” said Jimbo Fisher, Texas A&M’S fourth-year football coach.
Ten years ago, doctors diagnosed Ethan with Fanconi anemia, a rare blood disease that “prevents your bone marrow from making enough new blood cells for your body to work normally,” according to the National Heart, Lung and Blood Institute. About 30 children a year are born in the United States with the disease, or about one in 130,000, according to St. Jude
Children’s Research Hospital.
Ethan’s new doctor in 2011, Margaret Macmillan, promised the Fisher family she would be frank and upfront about Ethan’s prognosis. As Jimbo explained, she was “never going to give you false hope or information.”
Then a few years ago, Macmillan sat down with the Fishers and offered an optimistic update.
“She said, ‘We have a chance to beat this thing and cure this thing,’ ” Jimbo said. “I don’t know if I’ve ever heard greater words in my life.”
Ethan was 5 when he was diagnosed with Fanconi anemia, and Jimbo and his wife at the
time, Candi Fisher, decided they were going to do everything possible to help their youngest of two sons, and others, with the disease.
A quarter-century ago, only one in seven Fanconi anemia patients survived a bone marrow transplant. Now it’s “greater than 90 percent,” Macmillan said.
One reason for that is the Kidz1stfund established by Jimbo and Candi a decade ago.
“We didn’t really know what (Fanconi anemia) meant, so we started researching it and trying to find out everything we could about the illness,” Candi said of the Fishers’ immediate reaction to Ethan’s diagnosis. “There wasn’t much information to find, but we found Dr. Macmillan in Minnesota, and it’s been a godsend. We started the Kids1stfund because we felt a responsibility and opportunity to do something to help.
“We wanted to help Ethan and anyone ever impacted by Fanconi anemia. I never imagined 10 years later we’d be saying it’s raised over $11 million. It’s truly been life-changing.”
The Fishers and Macmillan recently offered an upbeat update with Kidz1stfund donors via Zoom teleconference. Jimbo said 100 percent of donations go toward the Fanconi anemia program at the University of Minnesota, the nation’s largest center of its kind for the disease. The Fishers fund the
Kidz1stfund staff and any additional costs, Jimbo said.
“We didn’t want any other parent to ever hear those words of the diagnosis and feel like there was no hope,” Jimbo said. “God doesn’t ever put more on your plate than you can handle. … We’re one of the fortunate who have a platform who can help make a difference. It’s not that we’re special. It just happens to be with what we do (in coaching), we can get to more people.
“Nothing in this world is undefeated. Everything can be defeated, but you need help, just like you do on a team.”
Along those lines, Jimbo, 55, said he was thrilled the 2020 Aggies finished No. 4 nationally — their highest final ranking in 81 years — but ultimately, that’s not enough.
“We finished fourth and won the Orange Bowl, and it was a great time, and everyone’s happy,” Jimbo said. “But I’m not happy until we win a national championship. I’m not happy until we’re on top with multiple national championships and we’re considered the best program in the country. Just like this disease, it’s not OK to be fourth.
“You’ve got to win it, you’ve got to beat it, and that’s what we’re doing. When (Macmillan) told us we have hope — I can’t tell you how big a thing that is from going from no chance to having a very, very, very, very strong, realistic chance this is going to happen.”
Macmillan added that gene therapy — modifying genes to cure or treat a disease — could be the ultimate solution, and the Massachusetts Institute of Technology is playing a vital role with the help of Ethan’s cells.
“The only cure right now for bone marrow failure that Fanconi anemia patients develop is a bone marrow transplant,” Macmillan said. “We’re working with doctors at MIT who are helping with our gene therapy efforts. They have Ethan’s cells, and they’re working to find the best regents to do gene therapy for Ethan. This is called precision medicine. And it doesn’t get any more precise and spectacular than taking cells from an individual patient and saying, ‘How do we improve these cells?’
“The knowledge we gain from working on Ethan’s cells is going to help us with other Fanconi anemia patients, and it’s also going to help thousands of patients with other diseases, like sickle cell, immune deficiencies, children and adults with leukemia and cancer. … It’s a really ambitious journey not only to cure Fanconi anemia (but) the life-threatening diseases associated with it.”
To donate to Kidz1stfund or learn more about the disease and Ethan’s ongoing fight, visit Kidz1stfund.com.
“I’ve been very blessed. I’ve got money and (other things),” Jimbo said. “But health is your No. 1 thing in this world — you can’t have anything without your health. And our loved one is in the best possible hands in the world.
“I’ve seen the results. I’ve seen what’s happened.”