When I first got sick with multiple rare diseases in 2017, I was told to "be patient" and that I would start to feel better eventually. My illnesses progressed as the years went on, yet I kept hearing the same thing, "be patient". This phrase began to frustrate me. Why should I be patient any longer? How long must one be patient? This frustration only grew when I lost my ability to eat. Every holiday and celebration, I patiently sat alone, watching my family eat large meals while the long tube down my nose delivered food to my small intestine. I went two years without eating a single meal while I patiently waited for the best treatment or doctor to come along. It was the most difficult time of my life, but I had no other choice but to wait. Finally, five years later, I got the life-saving treatment I so desperately needed. After four major surgeries, and dozens of medications and therapies, I can finally eat. Patience kept me alive. I could have given up. I could have stopped treatment. I could have stopped fighting. But I chose to be patient and trust the people around me. Without patience, I would probably not be alive.

As a young child I only ever thought there were three sicknesses in the world; the one that made your throat hurt, the one that would make you throw up in the middle of the night, and the evil cancer that took my cousins life far too soon. The magic medicines that the doctors would give me any time a fever burned, or ears ached was enough to convince me that there was no sickness I could ever get that would go uncured. However, at only seven years old my naivety started to fade when the doctors didn’t have enough magic tablets or syrup to destroy the monstrous migraines that kept me home from playdates or the stomach aches that stole restful nights. Throughout high school my health had spiraled after the onset of a neuromuscular disease and the exacerbation of a genetic syndrome that decimated my ability to eat. By the time I turned seventeen there was no more magic left, only a string of diagnoses and prayers for a miracle that seemed beyond reach. My “miracle” came on April 8th, 2021. 1,031 miles away from home, I was wheeled into an operating room of a hospital I had only been in once before. Terrified to my core, I was about to place my life in the hands of a man I had only met twice before. A silent prayer flooded my being that this would be the finale of the nightmare that had consumed my life for far too many years. In an instant I was in the recovery room with tears of joy. A few hours later I ate a small meal without pain or nausea for the first time that I can remember. I had no feeding tube. This day was the closest I had ever felt to feeling that magic again. However, there was no supernatural entity at the root of this blessing. Only a compassionate soul who made one last effort on a girl who had been told there was nothing left for her. Only months later the pain and nausea spiraled, and the “miracle” cure seemed out of reach once more. Feeding tube after feeding tube, test after test, it was determined again that I had to will my life to the hands of a transplant surgeon. An “auto-transplant” had never touched my vocabulary before. However, on March 9th, 2022, I laid on the sterile table of an operating room, 300 miles from home. Almost a month later, I can finally eat again. Another miracle. There is nothing more I desire in the world than to give others their lives back like my doctors gave back mine Throughout my struggles with my health, I was told time and time again that I couldn't be helped, because the doctors I needed did not treat kids. I impatiently counted down the days til my 18th birthday for years. Fortunately, I was able to find only two doctors in the country who were able to help my condition while I was still a child. I want to pursue pediatric specialty medicine because I believe that no child should have to pray for their 18th birthday so they can be helped. I want to help other kids like myself who desperately need a miracle. No child should be disqualified from life-saving treatment of a disease (rare or un rare) because they do not have access to the specialists they need due to their age.