WALLINGFORD — Cook Hill Elementary School first-grader Collin Reilly doesn’t know what it’s like to eat.
The 7-year-old has depended on a feeding tube since he was an infant, when doctors discovered a five-centimeter cancerous tumor in his brain.
“It was scary,” his mom Jennifer Reilly said. “I’ve had to find reserves of strength that I didn’t know I had. Even now I get teary eyed thinking about it.”
Reilly’s cancer made him so nauseous from eating as an infant that he developed an aversion to food. He is able to swallow, but hasn’t eaten solid food since he was 6 months old because he associates it with illness, his mom said.
“He doesn’t understand anything about eating and chewing,” she said. “The nausea was just too much for him. He learned to not like food.”
Doctors inserted a feeding tube into Collin’s stomach. It is used to give him liquid PediaSure, his only food source, his mom said.
A few therapists in the area offer therapy for pediatric feeding aversions, however the treatment isn’t covered by the family’s insurance.
To help the family pay for therapy out of pocket, Serenity Salon and Day Spa, 118 Center St., is holding a fundraiser this Sunday from 10 a.m. to 3 pm. The salon hosts a fundraiser every year, dubbed the “Cut-a-Thon,” to raise money for a child diagnosed with cancer, salon manager Karen Poltronieri said.
Customers can pay cash for haircuts, massages, and other salon and spa services. All profits, including tips, will go to help the family. Only cash will be accepted.
Past salon fundraisers have raised as much as $3,000 for families, a figure “we would love to surpass,” Poltronieri said.
“I really love to give back to the Wallingford community,” salon owner Theresa Cipriani said. “I’m very passionate about helping families with children who have cancer.”
Research indicates feeding problems such as Collin’s are “neurologically wired” from repeated associations of food and illness.
To teach Collin to eat again, a therapist will put him through a series of progressive steps over time — a method called “systematic desensitization.” Once Collin learns to touch food, for example, he will move onto putting food in his mouth before eventually eating, his mom said.
“We have to desensitize him to the food and get him to know, ‘Okay, this isn’t going to make me sick,’ ” she said.
In therapy, Collin will have to overcome an additional challenge most children don’t face — he can’t see the food in front of him.
Collin became permanently blind at 6 months old after doctors performed surgery to remove cancer tissue from his brain. The surgery cut off blood flow to Reilly’s optic nerve and made him permanently blind in both eyes, which doctors said could happen prior to surgery.
“We knew it was a possibility,” she said. “In the big scheme of things, when you have a five-centimeter tumor, blindness” is not as significant.
Jennifer Reilly said her son is very sociable despite his limitations. He lives in Wallingford with his parents and older brother Liam, 9, and enjoys interacting with peers at school, where a full-time paraeducator assists him.
“He loves music and loves dancing,” his mom said.
Collin will finish his third round of chemotherapy next week, after which “it’s wait and see,” Jennifer Reilly said.
“This is a tumor that can grow at any time and grow quickly,” she said. “As long as the cancer stays stable, he doesn’t have to go back on treatment.”
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