In our food-driven culture, 12-year-old boy has to get by without eating

Where: Hobe Sound Community Presbyterian Church, 11933 S.E. Juno Crescent, Hobe Sound

Information: www.facebook.com/HobeSoundMOPSBenefitWalk

Hosted by: Mothers of Preschoolers Hobe Sound

Our culture is a food culture.

We Americans eat when we’re relaxing and we eat when we’re entertaining. We eat for birthdays, anniversaries, weddings and wakes.

Tyler Kenny is an all-American, Little League-playing boy.

But he cannot eat — not the way most of us can.

Last September, the 12-year-old was stricken by dull, constant pain in his stomach, abdomen and chest.

“We thought he was having appendicitis,” said his father, Tom Kenny.

Tyler looked pale. He had dark circles under his eyes.

His pediatrician sent him to a gastroenterologist, who discovered his esophagus was swollen shut. White masses were growing inside it.

“They told me they could not believe he had never gotten any food stuck,” recalled his mother, Tammy Kenny, a science teacher at Jensen Beach High School.

The white masses, it turned out, were made up of eosinophils (pronounced ee-oh-sen-uh-fills), a type of white blood cell that can trigger a host of disorders — including Tyler’s condition, eosinophilic esophagitis.

It is sometimes triggered by food allergies, so his doctors recommended eliminating the six most allergenic foods: milk, eggs, wheat, soy, fish and tree nuts.

“He was still in severe pain,” Tammy said.

They changed his medication, but the white masses only grew larger, an endoscopy revealed.

“What’s causing this, we have no idea,” Tammy said.

Tyler left David L. Anderson Middle School in October and started working one-on-one with a teacher through the Martin County School District’s Hospital Homebound program.

In January, when Tyler’s esophagus swelled shut again, he started an “elemental diet” of doctor-prescribed formulas and drinks. They don’t taste good, but they supply all of the calories, vitamins and minerals Tyler needs.

The alternative is a feeding tube, which Tyler and his family want to avoid at all costs.

Researchers at Cincinnati Children’s Hospital, where Tyler is seen every three months, are looking for treatments and cures for eosinophilic disorders.

But it’s a waiting game for the Kenny family. Tyler recently was allowed to add lamb back into his diet (it’s one of the least allergenic foods in the world), so he eats that for dinner most nights. As counterintuitive as it is, Dum Dum lollipops are allowed, too.

When I met Tyler at his home this week, he was sipping his chalky formula from a plastic cup. He drinks it almost all day long to ensure he gets the required 2 quarts.

The formula costs $1,600 a month and is not yet covered by his Florida Healthy Kids insurance. His parents hope that will change.

Tom Kenny was laid off from his job as an environmental scientist late last year. It was a financial blow to the family, but there has been a silver lining: It has allowed him to be home with Tyler on the bad days.

And there are bad days.

“We just hope the good days outweigh them,” said Tammy, a breast cancer survivor who has been in remission for eight years.

Tom and Tammy have three other sons, ranging in age from 3 to 14. The family is quick with a good-natured joke — even if it’s about the awful taste of Tyler’s formula. It’s part of how they cope.

The other part is faith.

“Sometimes it’s so overwhelming it’s hard to breathe,” Tammy said.

But they get by.

“I have to give it to God,” she said.

Tyler thought for a long time when I asked him how he copes.

“Don’t think about it too much,” he finally said.

He has one request for his June 8 birthday: no cake.To help the family with Tyler’s medical expenses, Mothers of Preschoolers in Hobe Sound is hosting a fundraiser 10 a.m. Saturday at Hobe Sound Presbyterian Church.

Yes, there will be food – but Tyler actually is looking forward to it. He’s going to run a “tasting station” at the buffet table.

Before people fill their plates with hamburgers and hot dogs, he wants them to have a sip of his formula.

It will be a small taste of his reality.

– Eve Samples (source: TCPalm)