Living Life to the Fullest as an Adult with FA

My story with Fanconi anemia (FA) began at birth. Although I was born with many anomalies and characteristics of FA, at the time, doctors deemed it impossible that I had a rare disease. Eight months later, doctors told my parents the devastating diagnosis, with the addition of the possibility that I may not live past the age of eight years old. My parents were shattered, but they were determined to give me as normal a life as possible. This was not an easy task, considering I was always sick and made frequent trips to the hospital.

Transplant at a very young age 

Preschool was an eye-opening experience for me, and the start of a lifelong love of learning. I loved my teacher and I made so many new friends. After only a few months of school, my bone marrow began to fail, and I needed a life-saving bone marrow transplant (BMT). School was put on hold until I could get better.

The beginning of my childhood was filled with countless medical appointments and long drives to find the best hospital to provide see me through bone marrow transplant and to provide the life-long care I needed. After visiting many hospitals and meeting numerous doctors, we found Dr. Stella Davies at Cincinnati Children’s Hospital and I received my BMT at the age of five. Though my transplant is done, I still go through annual doctor appointments and cancer screenings.

Living with FA as an adult

One way I describe my life living with FA is this: it’s like being picked last for a sport or a group project. It’s that feeling of dread and anxiety and hurt. It’s annoyance and rage that fill up inside of you. It’s the wish that something would change.

Because of FA, I have a lot of noticeable characteristics such as short stature, hand anomalies, speech impairment, and a hearing impairment. Many people mistake me for being 12 years old, even though I am 20. When I go to grocery stores, the employees ask me where my mother is. When I go to my favorite restaurants, I automatically get handed the kids menu and the kids cup, and I have to explain to them that I’m a 20-year-old woman.

In addition to the comments about me being so short and looking so young, I get a lot of questions. I don’t mind sharing my story at all, but sometimes the questions are asked at the most inappropriate times, such as when I’m trying to order at a restaurant, walking around in a mall, or even at a block party when I’m meeting new neighbors.

One time, I went to Lollapalooza with my best friend, and the kids my age kept teasing me as I walked through the crowds to find the perfect spot to see the artist on stage. I could hear them laughing, saying, “You’re too young to be here. The kids’ hours ended an hour ago.” 

At my own high school graduation ceremony, I heard the whispers of the kids I grew up with, commenting to each other about my height to their friends. The parents gawked as I walked across the stage to receive my honors diploma.

I may have many differences compared to my peers who don’t have FA, but I don’t let any of them define me. Instead, I embraced them, and I became a bright and outspoken woman.

Life in College

I am currently a student at Butler University, and I truly love the college experience. I’ve joined many clubs and activities on campus. I am a member of the improv troupe, and I’ve made a lot of friends there. Despite being short and people misunderstanding me and underestimating me, I make people laugh during the improv scenes, putting my power to the test despite my differences.

I also work on campus with the University Program Council (UPC). UPC sets up activities and events for the students on campus. Some of the programs we do are plant nights, roller-skating nights, and movie nights. We even go to off-campus events such as Pacer’s basketball games, concerts, and escape rooms. Working here has allowed me to prove to others that I am a responsible person, and my ideas deserve to be heard. In addition, I’ve established good relationships with my fellow coworkers.

I also applied to be a Residential Assistant (RA) on campus. I am very excited to see if I will get the position. I know I am a responsible person capable of being able to manage a floor of underclassmen and be a good resource and guide throughout their year.

Most recently, I joined a sorority on campus. This was extremely nerve-wracking for me, as I am not what others would call “a stereotypical sorority girl”. I look a lot different than the girls surrounding me, and I have very different hobbies, personalities traits and life experiences. The process was extremely challenging for me mentally because, at the time, I could not picture myself in a sorority, and I was afraid of the judgments I would receive. Despite my concerns, I found my perfect sorority, and I love them: Tri Delta!

I am proud to say I am a part of the Fanconi Anemia Research Fund’s FA Adult Council. Being on this council makes me feel validated and seen, and that’s a big lesson that I take away from life. I love hearing the diverse ideas to improve outcomes for those with FA, and I enjoy the feeling of being a part of something bigger than myself.

My hope for the future

I am 14 years post bone marrow transplant, and I’m wishing for many more years of a healthy life. I’ve accomplished a lot in my life through academics, clubs, having fun with my friends and family, and enjoying my interests such as theatre, movies, art, music, traveling, and dogs. 

Even with all of the challenges and difficulties I’ve faced in my life, I don’t let them get the best of me. I just let all of that allow me to be a positive person and a good influence on those around me. Life is too short to focus on the negatives and frustrations. It’s important to have fun, take advantage of new opportunities, and remember what matters in life.

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