Lukas Stone is one of about 80,000 kids in the United States who have Crohn’s Disease. He wishes he didn’t, of course, but he handles it like a champ, says his mom, Julie Stone.
“He amazes me that he doesn’t get more upset about it than he does,” says Julie Stone of Chapel Hill. “He takes ownership of it and realizes that stuff will make him sick.”
Crohn’s Disease causes chronic inflammation and damage in the gastrointestinal tract, according to the Crohn’ & Colitis Foundation of America. More than 1.6 million Americans have it. It typically is diagnosed between the ages of 15 and 35. Today, about 80,000 children are living with the disease, but it’s often misdiagnosed, with children suffering symptoms for a while before answers are found.
This year, the Carolinas Chapter of the Take Steps for Crohn’s & Colitis Walk has named Lukas Stone its “honored hero.” His team not only will lead the walk, but Lukas, now 10 and in fourth grade at Durham Academy, will give a speech before the walk starts. More than 700 walkers are expected to participate in the awareness and fundraising event Saturday, April 25, at Lake Crabtree County Park.
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The cause of Crohn’s Disease isn’t known, but researchers believe it could be a combination of genes, the immune system turning on itself and environmental factors.
Lukas’ symptoms started when he was just 8 years old with diarrhea that persisted for weeks.
“In the process of trying to figure out what was wrong, he started running a fever every day of 102,” says Stone. “He was having debilitating stomach cramps every time he ate. We were lucky; his pediatrician was on the ball and ran a lot of tests and figured out that his inflammatory markers were really high. He sent us to a specialist, and Lukas was diagnosed pretty fast.”
Stone and her husband had lots of questions.
“It was overwhelming for us in the beginning, because we had to completely educate ourselves about the disease,” she says. “In the beginning, we were getting a lot of, ‘Oh, you’re not ready for answers to those questions.’ Luckily, I realized it wasn’t a good fit for us, and I requested to move his care to UNC Children’s Hospitals. His doctor there is fantastic.”
Dr. Ajay Gulati treats Lukas now. Lukas is in remission – determined by his inflammatory markers, his height and weight and how he describes his quality of life.
“He makes Lukas feel like he’s important,” Stone says of Dr. Gulati. “The thing I say to everybody first thing is, ‘Find a doctor who likes you, who likes your kid, who you can get along with, and who treats you as a partner in this process instead of a victim. Dr. Gulati is very humble, very connected to the kids; he’s amazing.”
The path to remission wasn’t necessarily easy though. Lukas undergoes what’s called exclusive enteral therapy periodically for eight to 12 weeks at a time, which means he’s basically on an all-liquid diet.
“Even when he’s not doing an exclusive diet, he still gets about 70 percent of his calories from that formula,” says Stone.
That can make birthday parties and other food-oriented events discouraging. But Lukas does his best. He brings his own snacks.
“He and his dad sat down one weekend and wrote a list of things he has to do,” says Stone. “If he’s ever struggling, he goes back and looks at his list. It’s to eat healthy, get exercise and get out in the sunshine, because he does have a harder time processing vitamin D.”
The family tries to follow Lukas’ list, too. They changed their diets as well.
“As a family, we don’t attend a lot of functions that completely revolve around food,” Stone said. “We don’t go out to eat a lot as a family. We choose to also do a gluten-free diet to cut out as much processed food and sugar as possible and very little dairy. Those are all things that are hard to digest.”
Stone also does her best to help Lukas put things into perspective.
“What we’ve told him is, ‘Don’t look at it as a restricted diet; look at it as a healthy diet,’” says Stone. “We just try really hard to make sure that he’s eating a lot of stuff that’s easy to digest and a lot of lean protein – fish and chicken. His vegetables need to be cooked.
“We avoid things like popcorn, things with seeds that are hard to digest,” she said. “We try to incorporate fermented foods like yogurt. There are also foods out there that are said to have anti-inflammatory properties so we try to incorporate those as well – honey and turmeric, pineapple and berries.”
But Lukas isn’t his disease. He loves Ninjutsu, a martial art, and takes classes at Chapel Hill Quest Center. In his speech before the fundraiser, he plans to talk about the center and his friends there.
“They’re like family to us,” says Stone. “And Lukas wants everybody to know, ‘I have Crohn’s disease, but I can still do this, and I’m good at it.’ They’ve been supportive of him every step of the way.”
Want to go?
The Carolinas Chapter of the Take Steps for Crohn’s & Colitis Walk is at 9 a.m. Saturday, April 25, at Lake Crabtree County Park in Raleigh. The event raises money for the Crohn’s & Colitis Foundation of America. For information, go to www.cctakesteps.org/triangle. For information on Lukas’ team, go to online.ccfa.org/goto/ATeamCalledQuest.