No stopping him: Liam doesn’t let complex conditions slow him down

liam stays active despite complex conditions

Liam Wise has spent a considerable portion of his 14 years on earth seeing various clinicians at Boston Children’s Hospital. So it wasn’t surprising when, asked by his mother, Sarah, what he wanted to do during a recent vacation, he eagerly replied, “Go to my hospital!” But for this good-natured teenager, Dr. Samuel Nurko and the rest of his care team at the Motility and Functional Gastrointestinal Disorders Center — and in 11 other departments — are like family he looks forward to visiting.

Even before he was born, Liam’s parents knew that he would face a number of health challenges when amniocentesis revealed he has an incredibly rare genetic disorder. As one of just a handful of kids that his physicians have seen with this chromosomal deletion, Liam is something of a cipher. “The hardest part is that because his condition is rare, doctors can’t really determine his prognosis,” explains Sarah.

Liam with Dr. Russell Jennings
Liam with Dr. Russell Jennings around the time he had surgery.

Unique health concerns

Liam’s first procedure took place not long after his birth, when Dr. Russell Jennings performed surgery to correct a congenital gastrointestinal disorder called duodenal stenosis, in which the first part of the small intestine (duodenum) is partially obstructed. Sarah recalls being shocked that the procedure was scheduled for Christmas Eve. “I was really touched by Dr. Jennings’s compassion. He gave up part of his holiday for Liam’s surgery,” she says.

Liams still sees Dr. Samuel Nurko for motility concerns
A younger Liam with Dr. Samuel Nurko

Over the years, the Wises have learned more about Liam’s unique health concerns. Between 2007 and 2009, he underwent three different surgeries to correct strabismus (crossed eyes), remove his tonsils and repair a submucous cleft palate. But perhaps his longest relationship has been with Dr. Nurko. As a baby, Liam was diagnosed with Hirschsprung’s disease. In this disorder, the intestinal nerve cells don’t develop properly, causing them to interfere with the movement of food and stools in the intestines and leading to blockages.

Liam received care for Hirschsprung's disease

A positive attitude

Because kids often experience constipation, diarrhea and other motility problems after surgery for Hirschsprung’s, Liam still sees Dr. Nurko and his team regularly. “The whole team is incredibly accessible and kind,” says Sarah. “They encourage me to trust my instincts when it comes to Liam’s health, and that’s not always easy.” While Liam loves Dr. Nurko, he has a special affinity for the center’s nurse coordinator, Fiona Paul. “His face just lights up when he sees her,” Sarah laughs.

Liam playing soccer

It’s a positive attitude that continues to serve him well. Although Liam has become more aware of his differences as he gets older — something Sarah says she and her husband, Christian, discuss with him as circumstances and questions arise — he isn’t letting that stop him. A sports enthusiast who enjoys skiing and playing baseball, basketball and soccer, he’s always the first to cheer on a team or congratulate a friend. And the sense of family Liam feels with Boston Children’s has extended to his older sister, Charlotte. When she broke her arm several years ago, says Sarah, “She couldn’t wait to go to ‘Liam’s hospital’ for her own care.”

Learn about the Motility and Functional Gastrointestinal Disorders Center.