Chapel Hill boy a role model for those with Crohn’s disease

04/01/2014 12:00 AM

04/06/2014 8:44 AM

Lukas Stone is a third grader at Durham Academy. He’s in Cub Scouts, practices the martial art ninjutsu, enjoys playing Legos with his friends, and is a big brother to his little sister.

For the past year he has also been fighting Crohn’s disease, an incurable autoimmune disease. He was diagnosed in November 2012, at the age of 8.

Lukas receives care at the UNC Pediatric Gastroenterology Clinic. Dr. Ajay Gulati, a pediatric gastroenterologist, has been studying Crohn’s disease and working with patients for the past 10 years.

Crohn’s disease causes inflammation of the digestive system and affects about 500,000 people in the United States, with at least 5 percent of these patients being children.

“Because it can cause damage anywhere along the intestinal tract, children are particularly susceptible to problems with growth and development,” Gulati said. “It’s also very tough for kids to manage symptoms like belly pain and diarrhea from a social standpoint.

“This demonstrates how amazing a patient Lukas is,” Gulati continued. “He has never let his disease slow him down, even while being on difficult therapies like a strict formula diet that allows no solid foods. He’s a role model for other kids with Crohn’s disease.”

Crohn’s disease is commonly treated with immunosuppressants to keep the immune system from attacking itself. Many patients also rely on feeding tubes to gain nutrition. Part of Lukas’ journey over the past year has been his reliance on a liquid diet as a primary form of treatment.

Julie Stone says the clinic suggested a liquid diet treatment for her son. “He had a fever every day, debilitating stomach cramps, was tired, and was miserable. By the second day of putting him on the liquid diet he was fine.”

Stone also attributes Lukas’s remission to other dietary changes. “We also switched to a gluten-free diet and took him off of dairy,” she said. “We’ve tried to cut out processed food and sugar.”

Lukas started off completing eight weeks of the liquid diet. After incorporating solid food back into his diet sent him out of remission, he did another eight weeks of the liquid diet. It was four months after this that a 12-week liquid diet was considered to keep Lukas in remission longer.

It’s a choice many wouldn’t be able to stick to, but Lukas views it differently. 

“I told them, ‘Let’s do this,’” he said.

Lukas takes nutritional substitute drinks in place of solid meals three times a day. He also takes probiotics and vitamins daily, in addition to immunosuppressants once a week.

He realizes how important it is for him to care for his body and reminds himself daily. He motivates himself to be healthy by exercising, playing outside, maintaining his treatment, and staying optimistic.

He has a particular passion for ninjutsu, a martial art that focuses on fight training as well as preparation for handling psychological opposition faced in everyday life. He says one day he plans to be a ninja. Bouncing around the room, he demonstrates his plastic throwing stars and shows his many colored belts, representing the rankings he has passed.

He recently graduated from the blue belts and says he plans to receive his black belt one day, a commitment he takes very seriously. “I wrote a letter promising to be a black belt one day, so I’m going to do it!” he said.

While Crohn’s disease is incurable and can lead additional digestive complications later on in life, it is manageable. Lukas wants other children with chronic illnesses to know they can still enjoy being a kid despite their diagnosis.

“I would tell other kids to not be scared. I would suggest they try the liquid diet,” he said. “I would tell them that everything will be OK. You can still have fun.”



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