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“I Want to Prove You Can Do Anything:” Crohn’s Disease Diagnosis Transforms Young Girl

11-year-old Katelyn Carter sits on the interview couch as she answers my questions about her Remicade infusions. Her sister, 8-year-old Alexis Carter, sits beside her.

Children with Crohn's Disease
Alexis on the right. Katelyn on the left.

“In my mind I’m screaming, ‘Get me out of school I need to be with her!’” says Alexis as she explains how she tries to accompany her sister to every infusion. Katelyn smiles down at her little sister with a grateful look in her eyes. It’s obvious these two have a special bond. They are a lot alike, too. Both girls are outgoing, confident, and well-spoken. Katelyn, Orlando native, wasn’t always this way, though. Less than two years ago, she was a different kid.

“I started to have stomach issues, and my stomach would start to hurt. I would have to constantly use the bathroom,” said Katelyn.

Michelle Carter, Katelyn’s mom, said her little girl was quiet and reserved. She considered getting her a counselor because she used to lie on the couch all day.

Top: Katelyn and Alexis. Bottom left: Samson the dog is a therapy dog who visits patients like Katelyn during procedures and infusions. Samson visits children at Arnold Palmer Children’s Hospital and pediatric GI offices in Orlando.

Doctors thought Katelyn was lactose intolerant. When a lactose-free diet didn’t improve her symptoms, doctors recommended a colonoscopy. In November 2016, just eight days after Katelyn’s 10th birthday, her life changed forever.

“The next day [after the colonoscopy] I ended up in the hospital because they said I had severe Crohn’s Disease and they needed to get fluids into me,” said Katelyn. “I had to have an MRE where you drank disgusting fluid, and so that stressed me out.”

capture 5

While Crohn’s Disease is more common in adults than children, between 5% and 25% of IBD cases are diagnosed during childhood or adolescence. Although the symptoms can be hard, many children report being grateful for the disease because it encourages personal growth.

“I now try to let people know that [Crohn’s Disease] happens, but it doesn’t stop you from anything,” said Katelyn.

“It’s almost brought her out of her shell. It’s a blessing and a curse, you know? I don’t want her to have it, but it’s made her who she is now,” said Michelle.

Katelyn has transformed into a confident and outgoing young lady. Her mission is to prove to her peers that Crohn’s Disease can be your biggest asset and your motivation to succeed; that you can use your chronic illness to make a difference. She started by planning a “Crohn’s Awareness Week” at her school last year where everyone wore purple and raised money for the Crohn’s & Colitis Foundation.

crohns awareness

“Crohn’s has made me do something because I want to prove you can do [anything] even if you have it,” said Katelyn. “When you think of something that’s uncured you think of cancer, but no one knows about Crohn’s and Colitis.”

Katelyn will represent her peers as the 2018 “Youth Honored Hero” at the Orlando Take Steps Walk for Crohn’s & Colitis.

Katelyn

Katelyn’s ability to let go of fear and use her disease to benefit herself and others is a lesson for us all.

Back on the interview couch, I ask Katelyn if she has anything else to add. This is when she looks over at her mom.

Katelyn does CrossFit, an exercise she wouldn’t have considered before her Crohn’s Disease diagnosis.

“Hey mommy, I have to ask you a question. What’s the word you use for ‘in the clear’?”

“Remission,” Michelle answers.

 

“Yeah…I’m in remission!” says Katelyn with a big smile on her face. Alexis, right by her side, performs jazz hands in excitement.

Donate to Katelyn’s Warriors.

 

 

 

You may also be interested in: “Crohn’s Disease 101: Everything the World Should Know” and “Why I am Grateful for Crohn’s Disease.”

 

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