A Positive Role Model for All

“I won’t let liver disease define me.”

Growing up, John Hoffman, ALF advocacy volunteer and two-time liver transplant recipient, didn’t advertise the fact that he had liver disease. “As a young man, I didn’t want people to think I was perpetually sick; and I wasn’t going to let liver disease define me.”

As a newborn, it quickly became apparent to John’s parents that something was wrong. Despite being a good eater, John wasn’t putting on any weight and at his six-week check-up, doctors began to wonder if there was something else going on inside his little body. John said, “I had blood tests, injections, scans and even an exploratory abdominal surgery at just six-weeks old.” Doctors desperately tried to rule out the worst case scenario – biliary atresia (BA), a rare liver disease of the bile ducts that only affects infants – but unfortunately, after a week of testing, they had no choice but to break the news to John’s mom and dad that their newborn baby boy had BA.

Fast Facts about Pediatric Liver Disease

• About 15,000 children in the U.S. are hospitalized with pediatric liver diseases annually.
• Symptoms of biliary atresia usually appear between two and six weeks after birth.
• Approximately 10-20% of infants with BA have abnormalities in other organs, such as heart defects or issues with their spleen.

“It was easier to hide than be thought of as sick.”

John said, “I underwent an unsuccessful Kasai procedure and inevitably had my first liver transplant at 13-months old. The transplant was successful, and I lived a fairly normal life, however I was incredibly self-conscious about my disease, especially as a young boy, so I kept it to myself and didn’t tell anyone about it. It was easier to hide it than to be thought of as broken.” Children with liver disease can feel alone. They may also feel guilt or shame for their condition, even though it is not their fault. Our interactive Pediatric Information Center features disease specific information, patient stories, videos, activities and educational resources – for every age group. A dedicated online Facebook support group, Life with Biliary Atresia and Beyond, also brings patients and families together to network, share stories and build relationships that will last a lifetime.

John continued, “By the time I was in seventh grade, I couldn’t hide my disease anymore. As I grew, things shifted internally, and my first transplant began to fail. I got really sick and developed ascites which made me tired, lethargic and downright miserable. Things got so bad that another liver transplant was imminent and at age 17, I had my second successful liver transplant from a deceased donor.”

Positive role model

While John’s transplant scar and daily medication regimen will forever be a reminder of his liver journey, he now lives a happy and healthy life with his high school sweetheart, Karen and their three kids – Grace, Grant and Garret. He hopes that by sharing his story, he can inspire more kids, especially young boys, to talk about their feelings and support one another. He also hopes his story will encourage more people to become organ donors. John recently authored a book, LIVEr My Journey of Transplant Survival, and said, “as a two-time liver transplant recipient, I want to show my gratitude by giving back and raising awareness about the gift of life.” As an ALF advocate, John hopes stories like his will help demonstrate the need to advance transplantation and break down the barriers that prevent people from becoming living organ donors.

Happy Father’s Day to all of the strong, resilient and passionate dads out there keeping their kids happy, healthy and safe. John, we thank you for sharing your story and for being a positive role model for all children affected by liver disease. For more information about ALF, pediatric liver disease or our advocacy efforts, please visit our website.