Colin has eosinophilic esophagitis, a rare allergic inflammatory reaction of the esophagus. He receives care at CHOP’s Specialty Care Center in Exton, which is near his home and is part of the CHOP Care Network. CHOP is one of only a few pediatric hospitals with a specialized program for eosinophilic esophagitis.
With the disorder, eosinophils, a type of white blood cell, show up in the esophagus, where they are not normally found, and attack food proteins. It can lead to pain, nausea and other allergic reactions.
Living with eosinophilic esophagitis
Many children with eosinophilic esophagitis are able to find types of food they can eat without pain, but not Colin. Since he was a toddler, he has been on a strict elemental diet and receives his nourishment from an amino acid formula. In short, he does not eat solid food.
“If you look at him, you would never know,” said his mother, Marguerite Finn. In every other way, Colin is just a regular kid.
Colin is in sixth grade at Peirce Middle School in West Chester, where the family lives. Marguerite said her son likes watching baseball and football. Colin and Daniel, his father, are big outdoorsmen and belong to the Boy Scouts. They regularly go camping — even in the winter — and fishing.
“I like to play sports and I like to fish,” Colin said in the advertisement. And he likes to hunt.
Colin even likes to cook, Marguerite said, and grills for the family. But he doesn’t eat anything himself.
This began when Colin was a baby. His sister, Emily, dropped a spoon with ice cream. Colin tasted it and, as his mom described it, had a severe reaction.
“Once the ball started rolling, it started going very fast,” Marguerite said.
CHOP expertise, close to home
Colin’s doctor is Chris A. Liacouras, MD, co-director of CHOP’s Center for Pediatric Eosinophilic Disorders, whom Colin sees at CHOP’s Exton specialty care center.
“I love CHOP. We spend a lot of time there and they are so nice,” Marguerite said. “Exton is like our second family. We know all the nurses by first name and you get that warm fuzzy greeting when you walk in.”
At Exton, Dr. Liacouras can use endoscopy to check Colin’s eosinophils. The procedure is done in the operating room under general anesthesia. That would be daunting for many kids, but Colin’s an old pro. Every few years, Colin tries a food challenge to see how he reacts. It’s always something bland, like turkey or brown rice, but so far no luck.
When they were approached about being in a CHOP ad, Marguerite and Colin jumped at the chance. “He sounds great. Me? Not so good,” Marguerite said. “But it’s important that mom got the last word in.”
Originally posted: May 2011