On Adam Turner’s 7th birthday, he blew out the candles on a soccer cake, then looked on as his friends devoured their slices. Last year he insisted on opening an electronic lunch account at school, each day typing his PIN number into the keypad but buying nothing. And at Halloween, dressed as a surfer, he collected candy but didn’t touch a piece.
A second-grader at Uwchlan Hills Elementary School in Downingtown, Pa., Adam dispatches his homework, makes friends and commands playground football games with ease. The one thing he can’t do: eat. Allergic to almost all food, Adam is hampered by eosinophilic esophagitis (EE), a gastrointestinal disorder that in this extreme form affects roughly 1 in 50,000 people. Far from filling Adam up, food inflames his esophagus like a toxic invader, triggering vomiting, diarrhea, rashes and infections. So every evening around 7 p.m., Adam’s mother, Annette, plugs a tube into a small surgically created opening above Adam’s bellybutton that connects to his stomach. For the next 12 hours, tethered to an IV pole as he sleeps, Adam absorbs an oatmeal-colored, amino acid-based formula that provides the nutrition he needs. “It’s annoying,” Adam says. “But it’s how I stay alive.”
Further complicating his young life, Adam also suffers from the gastrointestinal disorder Crohn’s disease, asthma and Ilven, a rare skin condition. “His immune system isn’t working right in a number of ways, ” says Dr. Chris Liacouras, Adam’s pediatric gastroenterologist at the Children’s Hospital of Philadelphia. “He’s one of the first we diagnosed [with EE] and he’s kind of teaching us.” Until he was 5, Adam could take in only ice chips and unflavored snow cones. Over the last two years, month-long food trials have turned up six fruits (apples, bananas, oranges, pears, grapefruits, watermelon) and two vegetables (carrots, green beans) that no longer ravage his esophagus. Liacouras says the list may eventually expand, but Adam’s current relationship with food is hardly normal, which may explain why the 46″-tall, 44-lb. dynamo would rather talk about sports, computer games or practically anything else. “Sometimes,” says Annette, 42, “I wish food would go away.”
Adam seemed a perfectly healthy infant until his sixth month, when Annette had to stop breast-feeding for medical reasons. Within 24 hours of starting on formula, Adam began to vomit, had trouble breathing and suffered his first skin eruption. Doctors diagnosed a milk-protein allergy and, to give Adam’s GI tract a rest, inserted a feeding tube that ran from his nose to his stomach. The tube, part of which had to be taped to his face, was clumsy and easily dislodged, and Annette often had to wrestle it back into place. Still, she says, “we thought, No biggie.”
But the worst was yet to come. After being introduced to mashed bananas, rice cereal and other baby foods, Adam began to lose weight, plagued by up to 12 bouts of diarrhea a day. This time, tests revealed EE, which, says Dr. Liacouras, “can be one food or it can be all food.” In Adam’s case, skin-prick testing proved him allergic to all foods, except carrots and pears—a discovery that tortured Annette. “To find I’d been basically poisoning him while feeding him….” she says, tearing up. “That was the most painful thing.” Adam was 2 1/2 when his reluctant parents agreed to have a device surgically implanted so that formula could be pumped directly into his stomach.
Adam quickly gained weight, and began to sleep better—a peace that eluded his parents, awakened up to 10 times a night by an alarm that signaled when Adam’s feeding tube was tangled. “It was worse than having a newborn,” recalls Adam’s dad, Mike Rubin, 56. Desperate, Mike, a healthcare administrator, and Annette, a corporate controller, leaned on disability insurance to bring in night nurses.
But that did little to ease Annette’s anguish at meals as she watched Adam spoon-feed himself ice chips from a cereal bowl. She soon began hating food herself. “I didn’t put anything in my mouth in front of him for about six months,” she says. After dropping 15 lbs., Annette forced herself to eat in front of Adam—which brought new challenges. In mall food courts he’d inhale and say, “Ah, french fries.” At dinner, he’d climb into his mom’s lap to touch and smell—but not eat—her food. Adam now says he finds watching people eat “boring.”
If Adam’s diet is severely restricted, his life is anything but. “We’re adrenaline addicts; we love adventure,” Annette says. Since infancy, Adam has logged thousands of miles on bikes and motorcycles, strapped to his dad’s back. He also surfs, plays soccer and baseball and goes on family trips. “We’ve hooked up feeding bags in parking lots and on highways,” Annette says. Adds Mike: “We don’t make a big deal, so he doesn’t.” That low-key approach extends to Adam’s school, where few people, classmates included, are aware of his condition. Sometimes at lunch he strays from his approved diet and experiments with hamburgers and cookies—then pays for it with gastrointestinal discomfort. “You would never know,” says cafeteria manager Beverly Frederick.
Adam prefers it that way. At 7, he just wants to be like other kids. Still, he’s aware of the toll his disability takes on his family. “One day he said, ‘Mom, did you really want a kid that has all these diseases?'” Annette says. “He tries to be tough, but he’s got a big heart.” The limited body of existing EE research indicates a normal life span for Adam, but Annette takes no day for granted. “What I’ve done with Adam in seven years is more than some mothers do in a lifetime,” she says. “I try to squeeze every minute out of every day.”