Student walking for Crohn’s cure

At 11 years old, Katelyn Carter has become quite the spokesperson for a disease that many people aren’t comfortable talking about. Diagnosed with Crohn’s disease in 2016, Katelyn is open with people in hopes of bringing attention to Crohn’s and ulcerative colitis, collectively known as inflammatory bowel diseases.

“It’s Crohn’s disease, which is a disease that affects your colon,” she said. “It gives you stomach pain. It can make you really tired. It can make you spend long periods (of time) on the toilet.

“I used to finish my homework on it,” she said matter-of-factly.

She will continue to share her experience with the disease, even after recently being told she’s in remission. Katelyn takes several pills daily, and every six weeks she has to get an infusion of Remicade.

“The infusion keeps her in remission,” said her mother, Michelle Carter. “If we stop the medicine, the symptoms come back.”

THE DIAGNOSIS

Brian and Michelle Carter, of Windermere, thought their daughter was lactose intolerant because of constant stomach aches, but they knew they needed to seek professional help when changing her diet didn’t relieve the pain.

The Lake Whitney Elementary School fifth-grader went through a battery of tests — including two colonoscopies — to get a diagnosis.

“The colonoscopy wasn’t so bad; it was the prep that was bad,” Katelyn said. “It was scary because I didn’t really know what to expect. My GI doctor said the procedure is nothing like the prep. … I had to have a second one a year later to make sure.”

If a positive attitude is important for healing, then Katelyn should have no problem.

“For the MRE, they make you lay still for a really long time,” she said. “The best part is the bed vibrates so it feels like a massage. But you get to watch a movie so you’re distracted. I got to watch ‘Finding Nemo.’ The second time I watched ‘Finding Dory.’”

Getting a diagnosis was important for another reason.

“They said if we wouldn’t have caught it, she would have gotten cancer,” Michelle Carter said.

WARRIOR IN PURPLE

Katelyn has stepped up in her role as advocate, speaking about Crohn’s disease to the student population on Lake Whitney’s morning announcements. She has her entire school involved in showing support.

“For the last two years I’ve written a letter and talked to my principal,” she said. “There’s a Crohn’s and Colitis Week in December, and I asked if we could find a reasonable date in that week where the whole school can wear purple. And everyone wore purple. Last year, I bumped it up and asked everyone to bring a $1 and wear purple.”

Katelyn has been named the Youth Honored Hero for 2018 and will participate in the April 28 Take Steps Walk, hosted by the Crohn’s & Colitis Foundation. Her team, Katelyn’s Warriors, is getting close to the $2,800 goal.

The foundation nominated her after meeting her at the 2017 walk and being impressed with her outgoing nature and positive attitude. She had to write an essay, which is printed on fliers being handed out to promote the walk, and she was present at last month’s walk kickoff at Dave & Buster’s in Orlando.

Katelyn will join the adult heroes onstage during the walk later this month.

To further promote the walk, Katelyn and her younger sister, Alexis, were invited to a television news station to meet a news reporter with Crohn’s and to make a fun video sharing walk details.

Alexis is one of Katelyn’s warriors and will be walking alongside her sister. She is always ready with a hug and a stuffed animal whenever Katelyn isn’t feeling well.

Katelyn, who will attend Foundation Academy next year as a sixth-grader, wrote in her essay:

“Now I’m in remission, which is amazing, and I feel GREAT! I love to do math, art, music and archery. Now that I have more energy, I also like to do CrossFit. I feel like I wouldn’t have gotten this far without my friends and family close by my side, especially my little sister, Alexis, who is always there for me.”