For Christina Desforges, a Canadian eighth grader whose favorite activities were watching movies and hanging out with friends, Nov. 19 was pretty much a perfect Saturday: At noon she left her house in Saguenay, a city 155 miles north of Quebec City, for the home of Yan Desormeaux, 16, a boy she had known for two years and been dating for a month. Joined there by another friend, Michael St. Gelais, 16, they talked and listened to music until around 6 p.m., when Desormeaux made himself two pieces of toast with peanut butter. Two more friends dropped in, they made popcorn and watched two films, Vampires and Kingdom of Heaven. Around 3:15 a.m. Desforges and Desormeaux slipped upstairs for an activity favored by teens the world over: making out.
Suddenly, Desforges’s perfect day turned terrifying. Within minutes of the embrace, according to St. Gelais, she came racing down the stairs, yelling, “I need air!” Grabbing an asthma pump from her knapsack, she inhaled deeply. When that failed to ease her breathing, she flung the front door open to gulp fresh air. Within moments she was collapsed on the front step and slipping into a coma. Though an ambulance arrived within minutes and rushed Desforges to a hospital, the teen never regained consciousness. Three days later she died—a victim not of an asthma attack, as she and her friends had assumed, but of anaphylaxis, a fatal food-allergy reaction to the traces of peanut butter that lingered in Desmoreaux’s mouth, nine hours after he had eaten his toast.
In Canada and across the border in the U.S., you could all but see the thought balloons forming over parents’ heads: She died from a kiss? For parents whose only brushes with food allergies have been school memos requesting that classroom snacks be nut-free, or allergy alerts each time a certain mother drops off her child for a playdate, Desforges’s death was a chilling wake-up call. But for the 11 million Americans who live with food allergies, and particularly for the anxious parents of the 5 million children with serious cases who must be mindful of every morsel they put in their mouths, it was a jolt long overdue. Though the incidence of food allergies has increased over the last decade—and more than doubled in children under 5 (see box on page 119)—doctors, educators and legislators have only recently begun to tune into the explosion. “What happened to this young lady in Canada, that’s what we’re dealing with,” says country singer Trace Adkins, whose daughter Brianna, 4, is severely allergic to gluten, nuts and many other foods. “We’re not talking about getting a rash; we’re talking about kids dying.”
For families like his, the world is booby-trapped with dangers. Adkins’s daughter recently went into anaphylactic shock after merely touching a piece of candy tossed at a parade. Cheri Barton Ross, 44, of Santa Rosa, Calif., whose son has a nut allergy, discovered that his favorite stuffed toy was filled with walnut shells. Cindy Moseley, 35, of Greensboro, N.C., learned that her 4-year-old daughter’s wheezing fit was a reaction to residual traces of peanuts left on a rug where her now-deceased grandfather used to drop peanut shells. Such incidents make parents hypervigilant. “People roll their eyes at me; they think I’m neurotic,” says Cara Rogers, 36, of North Attleboro, Mass., whose daughter Carry, 5, has multiple food allergies. But after the Desforges story broke, Rogers received calls from several friends saying, “You’re not going to believe this.” Rogers’s unspoken retort? “Okay, do you believe me now?”
The obstacles to educating the general population are many. “People can’t believe that a child who looks so healthy could actually react so violently to even a trace of a peanut,” says Gina Clowes, 45, spokeswoman for http://www.kidswithfoodallergies.org, whose son Daniel, 5, has multiple food allergies. Moreover, the eight major allergens—eggs, peanuts, tree nuts, shellfish, fish, wheat, milk, soy—seem so benign, and reactions run such a wide range, from swollen lips to a deadly drop in blood pressure. How can you know what to take seriously? “Once a reaction begins, you have no way of knowing how severe it will become,” says Anne Munoz-Furlong, CEO of the Food Allergy and Anaphylaxis Network. “You must take every symptom and reaction very seriously.”
Parents of sufferers have had to learn to wear many hats. They become creative chefs, hot only cooking all their children’s meals and checking all the ingredients in store-bought products, but also reporters, phoning manufacturers to learn precisely how the products are made. (If nut-free cookies, for instance, are baked on a pan also used for nut-filled cookies, there is a danger of what allergy experts call “cross-contamination.”) They become sleuths, sniffing out the hidden allergens in everything from pet food to car-wash products. And they have become skilled lobbyists. Moseley successfully battled the state of North Carolina so that her son Jonathan, 6, can go to school carrying his EpiPen—a device that delivers an emergency dose of epinephrine to ease an allergic reaction for 20 minutes, long enough, with luck, to get to an ER. Debbie Quillen, 34, of Ft. Mill, S.C., had her son Brandon, 8, labeled with a “hidden disability” under the Americans with Disabilities Act so that his school would have to create a zone where he could eat safely. “When I started this, I was almost mocked,” she says. Now, she says, the school is “a model for anyone with an allergy.”
National efforts are also beginning to show results. On Jan. 1 a federal law takes effect that requires clear labeling of the eight major food allergens. Two months ago a bill was introduced that calls on the federal government to create a national standard that would guide schools in how to educate faculty and staff about food allergy management. (See box below about how schools are coping.)
But no manner of vigilance can protect an allergy sufferer from all contingencies—as the Desforges family learned the hard way. Diagnosed at age 2 with a nut allergy, Christina always carried her EpiPen, though there was little cause to be on the lookout for extreme reactions. She’d gone into anaphylactic shock only once in her life, at age 5, after eating a nut-filled chocolate. Proximity to peanuts had never been a problem, nor was it on Nov. 19 as she sat beside her boyfriend while he ate peanut butter. When her breathing problems started hours later, she pulled her asthma inhaler, not her EpiPen, from her knapsack. “She didn’t know she was having an allergic reaction,” says her distraught mother, Nathalie, 35. “It was no one’s fault. It was destiny.”
The one thing that perhaps could have saved Christina was the foresight to tell Desormeaux about her allergy. Typically, teenagers resist such precautions. “Adolescents think they’re invincible,” says Dr. Michel Miron, the Saguenay coroner. In Christina’s case, however, she may have been lulled into a sense of safety after so many incident-free years. And, really, what teenager, about to lock lips with a new boyfriend, stops to think about the risks lurking in his mouth? Ironically, if Christina had told Desormeaux, she would have discovered that her boyfriend was not only sympathetic but knowledgeable as well: Desormeaux, it turns out, suffers from a severe egg allergy.
Jill Smolowe and Pam Lambert. Tom Duffy and Eileen Travers in Saguenay, Mary Esselman in Charlottesville, Va., Nina Burleigh in New York City, Sean Scully in Philadelphia and Sandra Marquez in L.A.