Meet Colitis Fighter

Joshua Detweiler, Age 6, from North Canton, Ohio

Why Joshua is an #ACHero: At age 5, Joshua was diagnosed with ulcerative colitis. The chronic bowel disease requires bi-monthly visits for infusions and some dietary restrictions, but it doesn’t keep Joshua’s spirit down. The self-proclaimed “Colitis Fighter” suits up in his cape each time he comes to the hospital where he fights his battle against colitis and brings happiness to those around him.

Sidekicks: His brother, Levi, because they’re stronger together as the “Mighty Detweiler Brothers.”

Super power: Ability to fight colitis and spread joy to others while doing it.

When he’s not busy overcoming obstacles: Joshua loves learning about outer space and looking through his telescope. He also enjoys Legos, playing baseball and watching Disney movies.

Did you know fact: Joshua is really good at playing board games and usually wins. In fact, he’s the reigning champ of Monopoly at his house.

Joshua’s story: Joshua’s natural enthusiasm is contagious. In fact, it’s made him a real-life super hero at Akron Children’s Hospital’s Infusion Center. With a huge smile and an even bigger heart, Joshua slips on his “Colitis Fighter” cape and spreads joy to others while he fights for remission in his battle against colitis.

Before Joshua battled chronic bowel disease, the compassionate super hero was diagnosed with a heart condition as an infant.

“At first we thought it was reflux, but a visit to the ER revealed there was more going on in his system,” said Kate Detweiler, Joshua’s mom. “Doctors ran a few tests and we learned he had a heart condition…I was worried for him at first, but knew we were surrounded by great resources to help him.”

Joshua was diagnosed with bicuspid aortic valve (BAV), an inherited form of heart disease in which 2 of the 3 leaflets of the aortic valve fuse together, which reduces or blocks blood flow from the heart to the body.

After a few tests and follow-up visits with cardiology, Joshua’s doctors felt his condition was manageable without surgery. In support, Joshua would need to have his condition monitored annually by his cardiologist to ensure his valves are working properly and not leaking blood into his heart.

At age 5, his family felt his health was under control until Joshua began having stomach discomfort and blood in his stool. After meeting with gastroenterology specialists and 6 weeks of tests, including a colonoscopy and endoscopy, Joshua was diagnosed with ulcerative colitis, an inflammatory bowel disease.

Joshua’s treatment plan required IV infusions, which administer medication directly into his vein, because oral medicine wouldn’t be as effective. His family also worked with a dietician to learn how dietary changes would better support his digestive system.

“Joshua was used to coming to Akron Children’s for his little brother (who has cerebral palsy) so when Joshua started showing gastro (gastrointestinal) symptoms, we knew he’d feel comfortable going there, too,” said Kate. “His gastro team is fantastic. He has a pretty severe case, but they approach his treatment and condition in a way that puts him at ease…”

Joshua’s mom felt strongly that part of his care should also include educating him about his disease.

“It’s important that he learns about and understands his disease so he can advocate for himself and isn’t embarrassed to talk about it,” said Kate. “I made him a book called My Chart that shows him things like where his colon is located and steps for putting in an IV. It also explains terminology he may hear, lists his care team by name and leaves space for him to write down his own questions and ideas.”

Today, Joshua follows a paleo diet, has quarterly follow-up visits with Dr. Sirvart Kassabian and continues with his infusion treatments every 8 weeks.

He’s so brave about his treatments that his mom gave him the super hero name, Colitis Fighter and a special cape that he wears proudly to each infusion session.

“We follow the same super hero routine every time we go to the hospital,” said Kate “We listen to our ‘power up’ fight song play list in the car to get him in the right frame of mind and then he puts on his super power cape, hops out of the car and gets to work…

“He makes people smile just by walking by or giving them a high-five or leaving painted rocks in the parking garage to brighten someone’s day… Joshua loves encouraging others even in the midst of his own difficulties.”