About

"I inherited the PRSS1 gene mutation from my mom and have shown signs of pancreatitis since birth. I grew up in and out of hospitals, dealing with doctors who were ignorant of my maternal family's history with pancreatitis. I was admitted to Birmingham Children's Hospital when I was five due to stomach pain. At the time, I had a cousin in the hospital just three doors down from me in the GI unit. We informed my doctors that we showed the exact same symptoms, leading them to run tests on me, confirming pancreatitis finally. From ages five to nine, I spent a large amount of time in the GI unit. When I was about 10, my stomach pain completely stopped, and we thought my pancreatitis had almost gone away. I could eat what I wanted, and play any sport I wanted, and for once in my life, I felt normal. However, in June 2021, my medical journey took a turn when I had the first attack in years, and was hospitalized for a week. Four months later, in September, I had another attack that caused my pancreas to leak into my liver, resulting in jaundice. After receiving medical care, I was discharged after a three-week stay. From September 2021 to May 2022, I couldn't spend more than two weeks out of the hospital. I missed out on most of my eighth-grade year due to constantly being hospitalized. In January 2022, after a week of tests, I passed the evaluation for the TPIAT. I returned to Cincinnati in February 2022 and underwent an ERCP that left my pancreas agitated. Instead of staying for one week, I ended up staying for four months, with my TPIAT surgery being moved from May to March due to my pain. I was the 99th TPIAT patient at Cincinnati Children's Hospital. I wanna thank pancreatitis, as it's shown me that it's okay to be yourself, and it's okay to be different."

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"Hi my name is Kennedy and I am 10 years old. In February 2021, I was hospitalized at Phoenix Children’s Hospital in Phoenix, AZ, with my first bout of severe pancreatitis. Having been diagnosed with cystic fibrosis at just one week old, myself and my family were very familiar with Phoenix Children’s, but I had never been hospitalized there for pancreatitis. 

For about a year after that, I was doing well, and we were hopeful that it was just a one-time occurrence. Then in April of 2022, I was admitted to Ann and Robert Lurie Children’s Hospital in Chicago, for another bout of pancreatitis while we were visiting family in Illinois. 

After a 10-day hospital stay in Chicago, I was able to finally get my lipase levels under control and go back home to Phoenix. Three weeks later, in May 2022, I was back in Phoenix Children’s Hospital for another bout of pancreatitis. I went on to have three more bouts of pancreatitis in 2022 and three in the beginning of 2023, all of which required hospitalization.

Wanting to find some answers about my condition my mom researched pediatric pancreatitis and found the pancreas care center at Cincinnati Children’s Hospital. On September 19, 2023, I became the 132 recipient of the TPIAT procedure at Cincinnati Children’s Hospital. 

I will never forget the support I received from the pancreatitis community and that is why I wanted to join Project 103"

"I never got used to the smell of antiseptic the moment I walked through those doors. I was diagnosed with pancreatitis in May of 2021. Crazy, right? How could a 12-year-old—who had never experienced any symptoms that would indicate pancreatitis—suddenly develop it? One day, I was arguing with my mom about hanging out with my friends instead of going to a hockey game, and the next, I was admitted to the hospital with a pancreatic enzyme level of 14,000. Being in and out of the hospital at such a young age forces you to mature in a way most kids don’t have to. I would always hear my mom say that God had dealt us a bad hand, and now we just had to figure out how to play it. Two years after my diagnosis, my GI doctor presented my parents with a possible solution: a surgery called a TPIAT. Honestly, I thought the name sounded funny at first. A TPIAT—total pancreatectomy with islet cell autotransplantation (long, I know)—meant removing my entire pancreas, the source of the problem, along with other attached organs. I was so young that I don’t think I fully grasped how life-changing this surgery would be or how many complications could come with it. After many conversations with doctors across the U.S., my family decided that surgery was the best path forward. So, in April of 2022, I found myself surrounded by unfamiliar faces and doctors in Cincinnati—a place that was nothing like Miami. The recovery process tested my strength, both mentally and physically. But without the love and support of my community back home, and most importantly, my family and friends, I don’t think I would have made it back in time for my 13th birthday, my 8th-grade graduation, and my graduation party. I can’t say the surgery fixed everything or that I’m now the healthiest person in the world—because that simply wouldn’t be true. My parents still worry that complications could arise out of nowhere. But these past two years have been both the best and worst of my life. So, thank you, pancreatitis. You were definitely something. But I’ll always be grateful for the one thing you gave me—the chance to meet people who have been through the same thing and to form friendships that will last a lifetime"