Karon Hogan is one of the kindest kids you’ll ever meet. He’s even won awards at school and camp for his big heart.
To give you an idea, almost every morning he wakes his mom, Jacqueline, with freshly brewed coffee, which he’s made just for her. “It’s really just a characteristic of how he is all the time,” she says. “No matter what is going on with him medically, he always has a good attitude.”
Karon was born with a malformation of his small bowel, which required surgery when he was a baby. This led to short bowel syndrome, which makes it difficult for the body to absorb nutrients and, in Karon’s case, can lead to intestinal failure. Fortunately, with Atrium Health’s Levine Children’s Hospital just around the corner, Karon has been able to get the care he needs close to home.
“We know him and have cared for him for 13 years. We have a bond with him – and we’re in his hometown,” says Ricardo Caicedo, MD, one of Karon’s gastroenterologists at Atrium Health Levine Children’s.
In addition to being nearby, Levine Children’s Hospital is named a Best Children’s Hospital by U.S. News & World Report – the only children’s hospital in the Charlotte region to receive this award. More importantly for Karon and his mom, it’s nationally ranked in gastroenterology and GI surgery, with doctors who specialize in caring for patients as complex as Karon.
After nearly a dozen surgeries, 7 blood transfusions and countless blood infections, 13-year-old Karon has spent more of his childhood in the hospital than most people do in a lifetime. “Levine Children’s Hospital is like our family. He even took some of his first steps there,” says Jacqueline. “They’ve grown up with him – we’ve grown up with them. They’re people I can depend on.”
No slowing down
Karon has had fewer hospitalizations in the past year and has been gaining weight well. But he still requires a central venous line, a catheter in his chest that gives his body the necessary nutrients. Fortunately, he’s been able to come down from 20 hours of intravenous nutrition a day to just 8 at night. “We’ve always catered the hours to be closer to sleeping time so that he can be a fully functioning kid during the day,” says Jacqueline.
And for Karon, being a kid is the number-one goal right now. That means hanging out with friends, getting straight A’s in school, competing in karate, completing 700-piece puzzles, going horseback riding with his mom and … you get the idea. “He has pulled through some major medical crises in his life, and that has not slowed him down,” says Dr. Caicedo.
Although Karon will live with his condition for the rest of his life, his GI team is by his side and is always looking for ways to set him up for the future he deserves. This includes considering innovative treatments before they’re available anywhere else, like a newly FDA-approved medication that could improve his gut function.
For now, though, Karon’s care consists of modifying his nutritional regimen, adjusting medications, and keeping him out of the hospital as much as possible. “He’s just like everyone else’s kid,” says Jacqueline. “He just has to be in the hospital every once in a while.”
Jacqueline knew Karon would have short bowel syndrome before he was born – she just didn’t know how severe it would be or the road it would take them down. But today, as she looks at her active, kindhearted 13-year-old son, she can’t help but think, “He’s living the life I wanted for him. He’s having fun – he’s being a kid.”
But don’t just take it from us. Take it from Karon, whose response to “How are you?” is almost always the same: “I’m good. I’m living my best life.”
