MEDINA — Brendan Forster’s parents pay a lot of attention to what he eats. The 8-year-old can’t try new foods or items his friends offer him without first checking his strict diet.
That’s because Brendan’s body misidentifies many foods as parasites and unleashes his immune system on them.
The result is painful swelling in the throat and severe stomach pain.
“He’s starting to learn how to read the labels and what to look for,” said his mom, Colleen Forster. She and her husband, Jack, got the official diagnosis for what they thought were allergies and digestion problems about one year ago.
She said it was relief to learn their son’s condition had a name: eosinophilic esophagitis.
“It was good to know what was wrong, but it was terror,” Colleen said. “I started reading about all these kids with eosinophilic disorders. Some of them can only eat from feeding tubes. It was just terror.”
Managing his health hasn’t been easy, and he likely faces more challenges ahead, she said. Some people who have eosinophilic esophagitis are allergic to nearly every food and get their nutrients and protein from a feeding tube.
Brendan’s condition isn’t that extreme, but his strict diet excludes all nuts, eggs and dairy products.
Colleen and Jack noticed Brendan was fussy as a baby. Doctors, along with family and friends, blamed it on colic, a common infant condition where babies cry and seem to be in distress. Colic often goes away on its own between 4 and 12 months of age.
One day when Brendan was suffering from a severe rash and was in a store with his father, a stranger approached and said, “Your son has food allergies.”
The Forsters got Brendan tested and found he had an egg and milk allergy.
As he grew older and was able to speak, Brendan often would complain that his stomach and chest hurt after or during eating.
“We thought he just had anxiety about going to daycare or going to school,” his mother said.
But one day at school, Brendan felt as though he was choking on a potato chip during lunch. The school called to say his lungs and airway were open, but his esophagus was swollen and he couldn’t swallow.
Colleen decided to line up some more doctor visits.
Brendan was diagnosed with eosinophilic esophagitis and put on an inhaled steroid. The Forsters got his name on a waiting list at Cincinnati Children’s Hospital Medical Center to see doctors specializing in eosinophilic disorders.
In December, the boy was admitted to the program.
“We’re sort of in a test phase now,” Colleen said. “Because we don’t know if it’s the steroid, or the diet, but he’s doing better.”
The doctors have taken him off the steroid to see whether he can stay healthy on his diet. They’ll try introducing new foods and see how he does.
Getting the diagnosis has been a learning experience for the whole family.
Brendan’s brother, Dylan, 6, is supportive of his older brother, their mother said.
“He doesn’t eat things Brendan can’t have in front of him,” she said. “When we go out to eat, he orders whatever Brendan is able to get.”
The family also is meeting other families in the area and throughout Northeast Ohio who struggle with eosinophilic disorders.
There are a number of variations of Brendan’s disease and the disorder affects people to varying degrees. For some, the reaction to the wrong food can be potentially life-threatening.
The family has attended a conference sponsored by the Campaign Urging Research for Eosinophilic Disease, or CURED, a nonprofit group dedicated to raising public awareness, education and funding for research to help provide treatments for those with eosinophilic disorders.. At the conference, they met other families and were surprised to learn how many families lived in Northeast Ohio.
“For a rare disease, we’re meeting a lot of people around here who have it,” she said.
Colleen said she met a parent whose child can only eat plain cotton candy — essentially fluffy sugar — that she makes at home. The rest of the child’s nutrients are supplied by a feeding tube.
Another family can’t cook food in their home because even the smell of food triggers a severe reaction.
In two weeks, the Forsters will host a fundraiser at Rustic Hills Country Club. Proceeds will go to the CURED foundation.
Colleen said special foods some families need are very costly and CURED donates 100 percent of its profits to helping families and research.
Since announcing the fundraiser, she said community businesses and private individuals have stepped up to help.
“It’s been amazing, the support we’ve received,” she said. “Our basement is full of items I have to make into raffle baskets.”
The family hopes by making their story public they can help not only raise money, but awareness.
“We went nearly eight years without knowing what was wrong,” she said. “I’m sure there are other people out there who just don’t know they have it.”
Contact reporter Loren Genson at (330) 721-4063 or firstname.lastname@example.org.