Meet the 2024 Scholars

"Describe a defining moment in your journey with CF that sparked personal growth or resilience. How did this experience affect you and what did you learn from this moment?"

I was a happy little kid. So happy and full of life, in fact, that there was talk that I was, perhaps, unrelated to the rest of my family. Though I had been diagnosed with Cystic Fibrosis at birth, I was symptom-free and doctors dismissed it as mild and inconsequential. Then, between the ages of eight and nine, I was hospitalized over thirty times with pancreatitis. I missed most of third grade and the entirety of fourth. It became so unrelenting that there were times I would be discharged from the hospital only to be readmitted again the next day with another attack. A couple of months after I turned nine, I weighed only fifty pounds and was being fed through a tube. That happy child I once was was nowhere in sight. Before I became too ill to eat solid food, I used to love to bake with my mother. So, in an effort to distract me, she presented me with a collection of supplies and I spent hours creating elaborate "cakes" and other inedible concoctions with bath foam and homemade slime. But, despite these little moments of joy, I had grown very impatient with being sidelined from my regular life and was losing hope that things would improve. In the fall of 2014, I was deemed ready for surgery. On November 18, 2014, doctors removed my appendix, pancreas, gallbladder, spleen, and part of my small intestine. My pancreatic islets were transplanted into my liver in the hope that they would ultimately graft and begin to produce insulin. I remember how terrified my parents were. In contrast, however, I remember feeling no fear at all, as the surgery finally gave me the hope I needed. When I awoke after the successful transplant, I remember thinking, "this is the best day of my life, the pain is gone. I will be baking and eating cake again soon!" I felt a new sense of determination to take charge of my own recovery and that tenacity reduced my projected two months in the ICU down to two weeks. Five weeks later I ate solid food for the first time in eighteen months. The first thing I ordered from the hospital cafeteria was chocolate chip pancakes; the closest thing to cake they had. Those pancakes made me happier than Dole Whip at Disney World and that's saying a lot for me. I know now that the surgery wasn't a miracle cure. Though my quality of life has improved exponentially, I will still experience times that I am not well. But I know with certainty that I have the grit and resilience to begin again. This experience on my CF journey taught me that happiness is tangible. It's the small things that, when added together, make up a full life. It's about eating chocolate chip pancakes. It's about reminding myself whenever I can't do something that, soon, I will be able to again. And, yes, it's about cake!