In 2014, head coach Jimbo Fisher led the Florida State Seminoles to win the BCS National Championship Game. He’s now head coach of the Texas A&M Aggies, recently deemed by 247Sports analyst Brad Crawford to be one of “most dangerous teams” in college football. But nothing on the field could be as tough as learning that his son Ethan had a rare condition called Fanconi anemia—nor as rewarding as discovering that a cure could be on the horizon.
Ethan was diagnosed with Fanconi anemia in 2011 when he was six years old. At the time, treatment options included blood transfusions and medications, but the family was looking for more. Fisher, alongside ex-wife Candi, began the Kidz1stFund to raise Fanconi anemia awareness, fund research, and encourage participation in the National Bone Marrow Registry. Kidz1stFund has donated more than $11.2M to the University of Minnesota Masonic Children’s Hospital, launched research into gene editing, and beagn exploring the intersections between Fanconi anemia and head and neck cancer.
As first reported by Barkley Truax of On3, Fisher recently shared, during a speech at the Dallas A&M Club, that this increased push for research has culminated in the development of gene replacement therapy. Even more excitingly, Ethan will begin treatment in June. Fisher believes that this has the potential to fully cure his son.
What is Fanconi Anemia?
Fanconi anemia is a rare inherited bone marrow failure syndrome. This disorder, caused by mutations in 15 genes (including FANCA, FANCC, and FANCG), leads to the reduced production of red and white blood cells, as well as platelets. Around 50% of patients are diagnosed before 10 years old. It occurs equally in males and females. Symptoms of Fanconi anemia can include:
- Bone marrow failure
- Short stature
- Failure to thrive
- Fatigue
- Low birth weight
- Small, crossed, or widely spaced eyes
- Deafness
- Skin color changes
- Heart, lung, kidney, and digestive tract abnormalities
- Excessive bruising and bleeding
- Small reproductive organs (in males)
- Difficulty breathing or shortness of breath
- Headaches
- Learning disability
People with Fanconi anemia also have a higher risk of developing cancers such as squamous cell carcinoma and acute myeloid leukemia. Because of this, frequent skin cancer screenings should be performed. Hormone therapy, steroids, antibiotics, and blood transfusions may all be used as treatments. Bone marrow transplants can be curative, but also come with side effects.
