Catching up with Lucas eight years after his multivisceral transplant

Lucas and his mom, Heather, aren’t shy talking about his health journey and his multivisceral transplant. “If other families can learn something from Lucas’ story, it would be to keep advocating for your child and to trust that gut feeling,” Heather says. “Without organ donors, Lucas would not be here today.”

Lucas was born with short bowel syndrome, a condition caused by the lack of a functioning small intestine. After his local doctors told her that nothing could be done, Heather was determined that Lucas’ story wasn’t over. He was transferred to Boston Children’s Hospital for a second opinion when he was 2 months old — where his family learned that he also had severe combined immunodeficiency and needed a bone marrow transplant.

The transplant that saved his life

After a successful bone marrow transplant (donated to him by his brother), Lucas’ road to recovery became even longer when he started showing signs of low gut motility — he was constantly sick and unable to keep food in his body.

When Lucas was 3, his parents met with the team in Boston Children’s Intestinal and Multivisceral Transplant Program to discuss the reality of him needing a five-organ transplant — a liver, small intestine, stomach, pancreas, and spleen.

“I’ve always known that he was a fighter,” says Heather. “Even though Lucas was constantly sick leading up to the transplant, he had this resiliency that helped us get through those challenging times.”

On his 5th birthday, all Lucas wished for was to be “normal” — and, after two years spent waiting for a transplant, his wish was granted that very day. “We were out as family when my phone kept ringing,” remembers Heather. “It was Dr. Christine Lee who told us that it was time for his transplant. We couldn’t believe it.”

Meet Mayor Lucas

It’s been eight years since his five-organ transplant, and Lucas has never been better. He’s 13, in his school’s theater company, and loves being a friend to all. “Everyone calls Lucas the ‘mayor’ of his school — he’s always so welcoming to new people and takes the time to talk to everyone.”

Since he’s been around doctors’ offices for most of his childhood, Lucas has become comfortable asking the hard questions and advocating for himself at check-ups. “He wants to stay in touch with his transplant team and isn’t afraid to speak up in yearly check-ups,” explains Heather.

While he can’t play any contact sports, Lucas appreciates the little things that most kids his age don’t pay attention to. “He’s never cared what other people think of him because he’s so well-rounded. He embraces every aspect of life — especially all the food he can eat now, which we never thought he’d be able to before.”

Unlike many other middle school kids, Lucas already has his mind set on what he wants to be when he grows up. “He wants to be a transplant doctor, just like Dr. Lee and Dr. Khashayar Vakili,” shares Heather.

Learn more about Lucas’ journey or about the Pediatric Transplant Center.