The day I was born, I was immediately rushed to surgery for Tracheoesophageal Fistula. The lower portion of my esophagus was connected to my trachea and not to the rest of my esophagus. I could breathe, but there was a chance I could aspirate. Within the first three years of my life, I’ve had over four dozen procedures requiring anesthesia, many involving balloon dilations of my esophagus, 8 birth defects, including an extra thumb, and a Bone Marrow Transplant (BMT) at age three in 2002 in Minneapolis. The decade before, the success rate for BMT’s was only about 25%. By the time I received my new cells, the success rate was nearly 75% because they started giving patients with FA less chemotherapy and radiation prior to transplant. I am incredibly grateful to be alive every day.
By my junior year of High School, I had stopped growing at a height of 4 feet 8 inches, weighing about 55 pounds. I am unable to gain weight, no matter how many calories I can fit into my body in a single day, which means I can eat all the donuts I want and it won’t have any effect on my weight! The real challenge is actually fitting all those donuts in my relatively small stomach. I live with severe scoliosis, cataracts, aortic root enlargement, and a few more diagnoses as a result of the radiation and chemotherapy received pre-BMT. I have learned to modify society around me to fit my needs as opposed to attempting to fit into a society that doesn’t fully accept me for my mind-to-body ratio. When asked for my age, I tell people I’m an 80-year-old man in a 12-year-olds body, even though my birthdate reflects otherwise.
As humans, it is natural to ask the question of “why”. Not asking any particular person but asking the universe, god, higher power, or whatever one labels the higher entity in which one cannot see, but can feel. I used to ask myself, why save a life that must live with so much physical trauma? I found it difficult to believe that medical complications are supposed to be a miracle. As I pondered these questions, I realized that the miracle of life, and mere existence, is the opportunity to exist at all, to overcome the undeniable obstacles in our lives, to achieve a human emotional connection, and the ability to contribute to the world around us.
What if we were meant to have this condition? What if our genetics aligned itself in such a way because we needed to have this condition in order to become the people we are today? Does that mean our genes are really mutated? It all depends on how we interpret our genetics. We can’t change our past or our genetic configurations, but we can choose to interpret them as being forces of good. My genetics told me that there was a mutation, an error in my code. I’ve chosen to interpret this as a gift; the opportunity to live a wonderful, healthy life is one of the greatest gifts that could ever be received. I’ve interpreted it as a responsibility to share my story with others and to bring peace and unity to the world. I am devoting my life to making a lasting contribution to humanity and society as a way of paying it back to the society that has kept me alive.