Living With Eosinophilic Esophagitis (EoE)
For a child living with eosinophilic esophagitis (EoE), specialized medical support at camp created something Nolan had been waiting for: freedom.
Nolan has lived with eosinophilic esophagitis (EoE) for nearly as long as he can remember. Diagnosed shortly after his first birthday, much of his childhood involved symptoms to manage, foods to be mindful of, medical appointments, and the lingering presence of “what ifs.”
Then he found Double H Ranch, our SeriousFun camp in upstate New York. There, something changed.
Finding Freedom at Camp
With experienced medical professionals who understood eosinophilic esophagitis and his individual needs built into the camp experience, Nolan didn’t have to spend so much of his time thinking about his safe foods or feeding tubes.
He could fish. He could make friends. He could laugh. He could simply be a kid.
For Nolan’s dad, Ken, that freedom came with something equally important: reassurance. “They’re so thorough in finding out what his needs are, what his daily routine is,” Ken says. “Their utmost priority is your child’s safety, and then their second priority is to make sure they have fun.”
That combination of specialized medical care for children living with EoE and other serious medical conditions, and the freedom to focus on childhood, is part of what makes SeriousFun camps different. And at Double H Ranch, Nolan was surrounded by campers who understood experiences that might be difficult to explain anywhere else.
That sense of belonging stayed with him.
Looking back, Nolan says he “definitely built confidence” at camp as he got to know other kids navigating medical conditions of their own. Most importantly, he realized: “You’re not alone in the world.”
Nolan’s mom, Anissa, saw that confidence grow. She watched him appear in camp videos, speak in front of crowds at camp events, and participate in stage night for the first time. Camp also connected their family with a community of people who understood.
“There’s a lot of people that don’t understand what you’re going through when you have a child that’s sick,” Anissa says. Connecting with other parents at camp gave her an outlet and a sense of belonging, too.
When Connection Opened New Doors
And some of those connections had an impact far beyond a week at camp.
During one of Nolan’s summers at camp, his family learned about a GI specialist who practiced closer to home. That connection allowed Nolan to receive care in Albany instead of traveling out-of-state to Cincinnati. The same specialist connected Nolan with a clinical trial for a new medication.
Today, Nolan’s eosinophilic esophagitis (EoE) is in remission. After participating in the trial, he began introducing foods he once couldn’t eat. Now, he can eat everything.
“Without camp and that connection, I probably wouldn’t be where I’m at right now,” Nolan says.
Camp didn’t change Nolan’s medical condition. But the relationships his family made there opened doors they hadn’t expected.
And that connection is one part of a much bigger story: The confidence to step outside of his comfort zone. The belonging that reminded him he wasn’t alone. The connections that continued to shape his life long after he went home.
Camp helped give Nolan something he had always hoped for: the freedom to stop thinking about his diagnosis and start thinking about everything else.
That’s how Camp Changes Everything.
Frequently Asked Questions About Eosinophilic Esophagitis (EoE)
Q: What is eosinophilic esophagitis (EoE)?
A: Eosinophilic esophagitis, often called EoE, is a chronic inflammatory condition that affects the esophagus, the tube that carries food from the mouth to the stomach. In people with EoE, a type of immune cell called an eosinophil builds up in the lining of the esophagus, causing inflammation that can make eating and swallowing difficult.
Q: What causes EoE?
A: The exact cause of EoE is not fully understood, but the condition is associated with an immune response that can be triggered by certain foods or environmental allergens. EoE is also more common among people who have other allergic conditions such as asthma, eczema, or food allergies.
Q: What are the symptoms of EoE in children?
A: Symptoms can look different depending on a child’s age. Infants and younger children may have difficulty feeding, poor appetite, vomiting, or problems gaining weight. Older children may experience abdominal pain, trouble swallowing, or feel as though food is getting stuck. Some children also change how or what they eat to make swallowing easier.
Q: How can EoE affect everyday childhood experiences?
A: Because eating is part of so many everyday activities, EoE can affect much more than mealtimes. Children may need to avoid certain foods, follow specialized diets, take medication, undergo repeated medical procedures, or use feeding support. These needs can make experiences like birthday parties, school lunches, sleepovers, travel, and other social activities more complicated.
Q: How can EoE affect everyday childhood experiences?
For children like Nolan, being in a setting where those medical and dietary needs are understood can mean spending less time thinking about their condition and more time participating, connecting with friends, and being a kid.
Q: Is camp safe for kids with EoE?
A: For some children living with EoE, complex dietary requirements, medications, feeding support, or other medical needs can make a traditional camp experience difficult. SeriousFun Children’s Network camps are intentionally designed to support children living with serious illnesses and complex medical needs, with experienced medical professionals and individualized support built into the camp experience.
That can give children like Nolan the freedom to focus less on managing their diagnosis and more on fishing, laughing, making friends, trying something new, and experiencing camp.
