Running the Boston Marathon with a purpose: Ben’s liver transplant journey

Ben stands with his hands in his pockets in front of a waterfall
Ben is running the Boston Marathon this year with the Boston Children's team — his way of thanking his care team.

Ben is no stranger to sports — in fact he’s probably the most excited when he’s able to get on a soccer field or with his team. This April, he’ll be running alongside the Boston Children’s Hospital team at the Boston Marathon! At 18 years old, Ben has already overcome incredible challenges, so taking on 26.2 miles should be a walk in the park.

The long road to the marathon

At 9 weeks old, Ben was diagnosed with a rare liver disease called biliary atresia and received a kasai portoenterostomy from Dr. Heung Bae Kim, director of Boston Children’s Pediatric Transplant Center. “The goal of that procedure was to hold off on needing a liver transplant for a couple of years,” explains Ben. “And that couple of years actually turned into 13 completely healthy years.”

Ben spent time playing soccer and hanging out with his friends like any other regular middle schooler — that is, until he was told that it was finally time for a liver transplant. After a year on the waitlist, he underwent a successful transplant with Dr. Kim and surgeon Dr. Khashayar Vakili in the Liver Transplant Program.

“My doctors told me that I’d be able to resume normal activities within six weeks, but I just really wanted to play soccer again,” laughs Ben. “So, with my doctor’s approval — and my parents understandably nervous agreement — I was able to get back to playing goalie on my middle school team.”

Baby Ben is swaddled in a blanket in a crib, surrounded by stuffed animals. A sign reads "9 weeks old and 2 days".
Ben was diagnosed with biliary atresia at 9 weeks old, starting his healthcare journey.

Honoring his medical team through marathon racing

Ben was healthy and thriving with his liver transplant for four years. But in the fall of his junior year of high school, he was admitted into the hospital for acute liver rejection.

As an inpatient for 30 nights over the course of four months at Boston Children’s, Ben faced a new set of challenges. “It was hard being away from everything and everyone; I had to balance schoolwork, my health, and friendships all while in the hospital for something really serious.” Ben shares that Dr. Kim and Dr. Scott Elisofon, attending physician in the Liver Transplant Program, along with the nurses and technicians, kept him positive and supported him with his health, academics, and everything in between. After a successful round of specific transplant therapies and steroid treatments to reverse the liver rejection, Ben wanted to give back to the hospital that saved his life.

“I wanted to recognize all that Boston Children’s has done for me and the other families that come here, so what better way to give back than running with the hospital team for the Boston Marathon?” says Ben. “Having the opportunity to participate in the race, raise money for the hospital, and run alongside other former patients, families, and doctors before I head off to college is my small way of saying thank you to everyone.”

Never slowing down

When reflecting on his time with Boston Children’s, Ben wants to remind other patients and families who may be faced with a transplant that everything takes time. “The biggest thing for me was taking it one day at a time,” shares Ben. “There would be days where I’d have to get labs drawn or be in doctors’ appointments all day, and that would take a lot out of me, but I’d always reflect on the things that made me happy and it helped keep my spirits up.”

Ben’s parents are thrilled he’s running in the Marathon — especially after watching him overcome health obstacles since he was a baby. “They couldn’t be more supportive; they can’t wait to watch me run with the hospital. It’s really been such a rewarding and full-circle experience thanks to everyone at Boston Children’s.”

Learn more about the Pediatric Transplant Center and register here to become an organ donor.

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