Angels for Eosinophilic Disorders
Zeke Angel knew the first day he met young Luke Zicarelli that he wanted to do something to help this brave and positive boy – and all the others like him.
Zeke, 17, and Luke, 5, both live in Texas, and they both suffer with eosinophilic gastrointestinal disorders (EGIDs). Children with EGIDs have painful reactions to food, often to nearly everything they eat. Food is like poison to their bodies, and every meal is a reminder of their lifelong battle.
Zeke, who was diagnosed with eosinophilic esophagitis in his early teens, had never met or even heard of anyone else who shared his diagnosis. Then one day, his hometown gastroenterologist, Michael Russo, MD, recommended he meet then 3-year-old Luke Zicarelli, who also has eosinophilic esophagitis, as well as eosinophilic colitis.
Despite their age difference, Zeke and Luke made an instant connection.
“We told Luke, ‘Zeke’s tummy hurts just like your tummy hurts,’” Luke’s mom, Amy, recalls. “Luke immediately understood. They became fast friends.”
A Shared Struggle
Young Luke’s tummy has hurt since birth.
“As a newborn, Luke was very unhappy and fussy whenever he was eating,” Amy says.
After many tests, Luke’s diagnosis was still unclear and his symptoms, including diarrhea and vomiting, were not going away.
Unlike Luke, Zeke’s problems with food weren’t severe until he was almost 13 years old. His parents, Cindy and Frank, noticed him struggling at his favorite activity: ice hockey.
“Hockey was always Zeke’s passion,” Cindy says. “But from the stands, it looked like he wasn’t putting in much effort. We thought he might have lost his interest in the sport.”
Zeke’s passion had remained, but he was having trouble gaining weight and keeping his energy level up. Because of a family history of gluten allergy, Cindy took Zeke to see Dr. Russo. After going through some initial food allergy testing and two scopes of his esophagus, they found Zeke could only eat turkey, peaches and apples without a horrible, sickening reaction.
Zeke and Luke were both referred to Cincinnati Children’s.
Finding Hope in Cincinnati
Cincinnati Children’s is home to the Cincinnati Center for Eosinophilic Disorders (CCED), the international leader in caring for patients with eosinophilic disorders and researching a cure.
“Cincinnati Children’s welcomed us like we were family,” says Mike, Luke’s dad. “Their care team had a full plan for our visit including tests, education and a discussion with us about the best treatment plan for Luke.”
“Although it was scary to hear Luke’s diagnosis, the doctors at Cincinnati Children’s made us feel like we were not alone – they would be with us on this journey,” Amy adds.
Luke’s journey includes testing a few foods at a time while managing his symptoms with medicines and new treatments, such as steroids.
Through this process, Luke has found some foods he can eat, like tacos. Luke’s tacos consist only of beef and the taco shell, but it’s one of his favorite foods because many of his friends like eating them, too.
Similar to Luke, the short-term goal for Zeke is to find the foods that cause him the least harm while giving him the nutrition he needs.
“I try three or four foods every three months,” Zeke says. “Then I go back to Cincinnati Children’s for biopsies that show how my body is reacting to the new foods.”
The long-term goal is finding a cure so Luke, Zeke and others like them can live a normal life.
Helping Others on Their Journey
EGIDs, which can affect the esophagus, intestines and/or colon, are increasingly being recognized and are a growing medical problem.
“Ending suffering from these perplexing disorders is dependent upon research,” says Marc Rothenberg, MD, PhD, director of the CCED.
After meeting with Dr. Rothenberg and touring his lab, Zeke found new hope for a cure for EGIDs.
“Luke was really sick when I met him,” Zeke says. “So I wanted to raise $1 million to find a cure.”
Zeke’s and Luke’s parents were inspired by Zeke’s enthusiasm and have joined together to raise money and awareness through an annual event they hold in Texas, PAR-TEE for a Cure Gala and Golf Outing.
After two years of the event, the Angels and Zicarellis have donated almost $250,000 for Dr. Rothenberg’s pioneering research at Cincinnati Children’s.
Having someone else who understands the experiences they have gone through has helped Zeke and Luke cope with the day-to-day challenges of their conditions.
“When Luke is eating, sometimes he’ll ask if Zeke can eat this, too,” Amy says.
The food restrictions have become an integral part of both families’ lives, and their bond has become stronger as they work to find activities outside of eating to enjoy with family and friends.
“Zeke and Luke like to play outside and with the Wii,” Amy says. “Luke also watches Zeke play ice hockey.”
Zeke says that being on the ice is a needed release for him from the pressures of school, the worries of being a teenager and the stress of his serious gastrointestinal disease.
Zeke knows when he needs some extra support he can count on Luke to cheer for him in the stands. And, as the team at Cincinnati Children’s works towards a cure, Luke and Zeke continue to cheer for each other – on and off the ice.
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