With the help of his care team at N.C. Children’s Hospital, Rocky Mount teen, Nick, hasn’t let a diagnosis of Crohn’s disease slow him down. Nick tells us what it’s like to be a teenager grappling with a chronic disease.

Rocking On: Rocky Mount teen doesn't let Crohn's disease slow him down

When Nick was in fourth grade, he was in so much pain and had lost so much weight that his doctors in Rocky Mount referred him to the pediatric gastroenterology specialists at N.C. Children's Hospital.

Tests revealed that Nick had Crohn's disease, a form of inflammatory bowel disease (IBD) that usually affects the intestines. Nick's condition was so severe that he was hospitalized for nearly five weeks and needed a feeding tube. His doctors were able to find a treatment that helped bring down the inflammation, and over the past four years, Nick has traveled the 90 miles to Chapel Hill at regular intervals for an intravenous infusion to keep any disease flare ups at bay.

Today, Nick is a healthy, bright 14-year-old who now comes back for treatment about every six weeks. He is back to a healthy weight, and things are going so well, the time between outpatient infusions will soon stretch to nine weeks. Despite his condition, Nick feels like a normal kid.

"Even though I have this, they have made it possible for me to live a normal life," says Nick. "I don't feel different."

Different, no. Special, yes.

"I love the welcoming feeling you get when you go there," he adds. "The atmosphere is so well set up."

His mother, Bonnie, agrees.

"People at UNC really care about us," she says. "We are not just a bed number or another patient. They care for each and every person they treat. We could go somewhere closer to home, but we could never do that. They have been so good to us."

Nick has had the same infusion nurse, Kathy LeFevre, for the past four years. She has become very special to Nick and his family.

"We just love her. She is one of the kindest, sweetest people in the world," says Bonnie. "Kathy is so good with all the children."

Nick recently learned his physician, Dr. Sandy Kim, not only treats him and others with gastrointestinal conditions but also does IBD research to find better treatments for children with Crohn's disease and ulcerative colitis, the prevalence of which is increasing. As many as two million Americans have some form of IBD, and about 100,000 to 140,000 are estimated to be children or teens under the age of 18.

"I always feel like I am in good hands. I feel safe with my doctors and nurses there," says Nick. "And it is very cool to know that Dr. Kim is doing research on Crohn's."

His mother feels even more strongly about Dr. Kim.

"Dr. Kim has been a saving grace," she says. "She is an angel. She has been our gift from heaven."

Nick is in eighth grade and hopes to be a psychologist one day. He loves to draw and really likes the art activities at the Children's Hospital, as well as the music room.

For Bonnie and Nick's dad, Mitchell, they appreciate these types of amenities, too, but for them it all comes down to the care. And they know their son is getting the best.

"You hate that your kids have to go through this," says Bonnie, "but UNC makes it easier if they do."

More about Nick

Hometown: Rocky Mount, NC; Nash County — about 180 miles roundtrip
Diagnosis: Crohn's disease
Primary pediatric specialty: Gastroenterology
Frequency of visits: Every six weeks; soon to be every nine weeks
Favorite caregivers: "I don’t think I know the answer to that one. Everyone is so good," says Nick.
Favorite thing about N.C. Children's Hospital: According to Nick, "The Children’s Hospital is a pretty welcoming place. Like when I first came here, I was here for a month, and I was never scared. It wasn’t sad here. [. . .] Oh, and the food, too, especially the pizza."

IBD care at N.C. Children's Hospital

The pediatric gastroenterology experts at N.C. Children's Hospital treat more than 300 children and teens with inflammatory bowel diseases (IBD), which include both Crohn's disease and ulcerative colitis. We are the only center in North Carolina involved in all of the major research initiatives, including quality improvement, risk stratification translational studies, IBD disease registries and clinical trials. Learn more about pediatric gastroenterology at N.C. Children's Hospital.