By Candi Fisher
On March 28, 2011, our son Ethan was diagnosed with Fanconi anemia. We had only heard of the disease about 3 weeks prior to the diagnosis, but in the last 17 months, our lives have been forever changed by those 2 words.
Fanconi anemia (FA) is a rare genetic disease. A person with FA has a mutation in their cells, and their DNA is not capable of repairing itself properly. In simple terms this means that exposure to every day things in our environment such as the sun and smoke, while eventually harmful to everyone, can cause irreparable damage to an FA patient very quickly. Cancers that are typically diagnosed in most people in their 40s, 50s or 60s, are typically diagnosed in FA patients in their teens and early 20s. This accounts for the average life expectancy of around 24 years old for someone diagnosed with FA, but the first obstacle is bone marrow failure.
Bone marrow is found in the center of the bones, and it is responsible for producing red blood cells (carry oxygen through your body), white blood cells (fight infection in your body), and platelets (help your blood to clot properly). A person in bone marrow failure has stopped producing all three of these, and without a bone marrow transplant he or she will die. The average age that an FA patient needs a bone marrow transplant is around 11. In order to have a transplant, you must have a match. The best match is found in a sibling, but Trey, our older son, who tested negative for FA is not a good match for Ethan. That means that when the time comes, Ethan will have to rely on the gift of a stranger in the bone marrow registry to save his life.
It took our family some time to come to terms with this diagnosis, but during that process, we made a decision to speak out about his illness. We were told that Ethan seems healthy enough to have about 3-5 years before he will need a bone marrow transplant. We decided the best thing that we could do was spend that time trying to raise awareness about this disease and raise money to further the research for this disease, so we founded Kidz1stFund. The response has been incredible! There were so many people who reached out to help, and because of that our fund was able to donate $500,000 to the University of Minnesota Amplatz Children’s Hospital to supplement their research for Fanconi anemia. This is the hospital that we have chosen for Ethan’s care. They have the largest Comprehensive Fanconi anemia unit in the country. We’ve also hosted many bone marrow registry drives, and through those efforts, 1,710 people have been added to the registry. We’ve had several contacted as a potential match, and one person has gone through with the transplant to save another’s life.
We’ve had many families within the FA community who have reached out to us from all over the world. I’ve even become good friends with an FA family in Virginia who happen to be huge Seminole fans! I’ve also made friendships with families who have multiple children with FA, and I think about all of the challenges they will face seeing more than one child deal with this disease. It has been wonderful to be able to communicate with others who share this journey though. It helps to share their experiences because so many of them are farther along in this process and can offer helpful advice, and with everything that we learn, it gives us the opportunity to make changes in Ethan’s everyday life to keep him healthy.
Ethan is still a normal, happy boy who fights with his older brother, Trey, too much, but we do have to be constantly aware of his surroundings. For example, when we attend Trey’s baseball games, he has to wear a bike helmet for protection from a foul ball. We also have to avoid smoke of any kind including roasting marshmallows over a backyard fire. We also have to be very mindful of sun exposure which can be difficult for a kid who loves everything outdoors and the fact that we live in Florida. He is very active and by looking at him, you’d never know there’s anything wrong. He is small for his age, which is common in FA kids, but it’s always fun when he steps on the bathroom scale and has gained even a ½ pound. He usually calls Jimbo, Trey, and me into the bathroom so that we can all share in his accomplishment.
He loves to golf, play baseball, and hunt with Jimbo and Trey, and of course he loves FSU! Trey and Ethan have many big brothers on our football team, and they all watch over and take time with them. We enjoy traveling with the team to the away games, and we try to spend as much time as possible going to practice or having dinner with Jimbo and the team. They are our extended family, and it was incredible to see them come together after Ethan’s diagnosis and join the bone marrow registry.
We don’t know what the future holds-no one does, but we do know that we will do everything we can to give Ethan the best chance for a long and happy life. I realize that as adults Trey and Ethan will look back on the time that Ethan was diagnosed with FA as monumental in their childhood. From those memories, I hope that they learn strength, compassion, and to fight no matter how bleak the situation may seem because you just might change the outcome. 
