5 Things to Know About Fanconi Anemia
There is more to my new book, Killer Shine, than meets the eye.
About two years ago, I was still in the early plot planning stages for the book when I first heard the story of Ethan Fisher. At six years old, Ethan was diagnosed with an extremely rare genetic disorder called Fanconi anemia.
My path crossed with Ethan’s briefly, back in 2008 when his dad, Jimbo, was hired as the offensive coordinator at FSU.
I was working for the Seminoles’ sports information office at the time and remember seeing the Fisher family at Jimbo’s introductory press conference. Jimbo and his wife Candi were effusively kind, happy folks, excited to embark on a new chapter of their lives in Tallahassee with their boys, Ethan and Trey.
But soon after the family settled in, blood tests led to Ethan’s diagnosis with FA.
2. Fanconi anemia has no cure.
The average lifespan for a person diagnosed with FA is 29 years.
I’m turning 29 later this month, so this number obviously sticks out to me. To imagine this stage in my life as the terminus instead of the beginning is a terrifying thought.
How could you ever cram all of life’s experiences into just under three decades? It’s not possible. I feel like I’m just now becoming comfortable in my adulthood. I’m finding my passions, deepening my relationships and growing into my personality.
I want Ethan and the other kids with FA to have these same experiences one day as they stand on the threshold of adulthood.
3. Fanconi anemia patients will eventually need a bone marrow transplant.
The first big hurdle of FA is bone marrow failure.
It’s an inevitable part of the disorder that’s further complicated by the unique attributes of FA. The genetic abnormality that causes FA keeps patients’ bodies from healing damaged cells. So, for example, while our bodies can easily repair damaged skin from a sunburn, FA patients’ bodies cannot do the same.
This means the typical chemotherapy and radiation treatments that patients undergo before a bone marrow transplant are exceptionally dangerous for FA patients. Transplants have to be done at special hospitals with FA experience.
They also need bone marrow matches that are as close as possible to the recipient’s bone marrow.
Family is not always the closest match. No one in Ethan’s family is a match for his bone marrow, so when the time comes for his transplant, the Fishers will have to look to the National Bone Marrow Registry.
You can very easily join the registry by ordering a free kit from BeTheMatch.org.
A few painless cheek swabs is all it takes to register your DNA on the national list. If you’re selected, a relatively easy, outpatient procedure on your end could save someone’s life.
What excuse could you possibly have not to do this?
5. Fanconi anemia research is saving lives every day.
Research into possible cures for FA is ongoing.
Donations to organizations like the Fishers’ Kidz1stFund can help doctors find a way to increase that average lifespan and eventually find a cure.
I made Fanconi anemia a part of the Killer Shine plot to help Kidz1stFund with their mission to raise awareness of this rare disorder with the general public.
Education is the first step, fundraising for a cure is the second, which is why a portion of the book’s proceeds will be donated to K1F.
Ethan’s mom, Candi, also wrote a beautiful foreword for the book to share the non-fiction story contained within this fictional book.
And you can also check out the special K1F & Killer Shine gift set that includes an “I Fight Fanconi” armband and $10 donation to K1F along with a signed copy of the book.