"I love you to the moon and back!"
This sad story of a teenager’s recent death from anaphylaxis in Elmhurst, Illinois reminds us how important our efforts are to have epinephrine available at all public venues. Annie LeGere’s mother, Shelly, is now working with Illinois lawmakers to pass legislation that would also authorize trained first-responders such as police, EMTs and firefighters to administer epinephrine in emergencies.
On the day of her 13-year-old daughter's funeral, Shelly LeGere knew she couldn't spend the rest of her life going over the agonizing moments before her daughter died.
The way Annie called at midnight from a sleepover at a friend's house in August, saying she was having trouble breathing and wanted to come home. The way the Elmhurst mother hurried out the door, still in her pajamas, with a bottle of Benadryl in case Annie's mild seasonal allergies were giving her trouble. The way the mother arrived within minutes — to find her daughter unconscious and barely breathing on her friend's kitchen floor.
"The police officer was there. I looked at him and I said, 'Don't you have anything? What can we do?'" said LeGere, an operating room nurse with decades of experience. "Every ounce of the nurse in me went out the door."
Annie LeGere died nine days later at Advocate Children's Hospital in Park Ridge from brain injuries that came as a result of anaphylactic shock after an unknown allergic reaction, likely to something she ate, according to her doctors. The death stunned members of the west suburban community, where grief-stricken teens have spent months planting trees, wearing pink bracelets, organizing a memorial walk and preparing for "Annie's Pink Christmas," a prom-like memorial held Dec. 12.
Shelly LeGere, her husband, John, and 23-year-old son Bobby have tearfully accepted those gestures. But while looking around the room at her daughter's funeral luncheon, LeGere vowed to do more.
Through a new foundation, To the Moon and Back, the mother has made it her mission to equip first responder emergency vehicles, schools and as many other public settings as possible with epinephrine auto-injectors, such as the best-known brand, EpiPens. If administered within minutes, they can successfully treat severe allergic reactions — and save lives. The foundation has collected nearly $40,000 so far, which LeGere plans to use to supply EpiPens to places in need, pay for allergy awareness speakers to visit schools and promote legislation requiring EpiPens in public settings.
LeGere joins a growing movement of legislators and allergy-awareness advocates who contend that a dramatic increase in food allergies in children — a growth of 50 percent from 1997 to 2011, according to the Centers for Disease Control and Prevention — has made it crucial to make EpiPens as readily available as automated external defibrillators used for emergency heart problems.
"I need to do something, something big, in order to make some sense out of this," LeGere said. "If (epinephrine) had been available, maybe Annie would be with us today."
According to the nonprofit Food Allergy Research & Education organization based in Virginia, nearly 15 million people — 6 million children — in the U.S. have food allergies, causing a growing public health concern. Food allergies result in more than 300,000 ambulance trips to hospitals each year for children under the age of 18, and teenagers and young adults are at the highest risk of fatal food-induced anaphylaxis.
Meanwhile, the availability of epinephrine treatments varies widely from state to state. In Illinois, a 2011 law permits schools to keep epinephrine auto-injectors in stock for general use, going beyond the past practice, where school offices held EpiPens only for students who obtained personal prescriptions. A 2014 expansion of the law gives more school employees legal permission to administer the drugs when needed. Since the law was first passed, 3,011 schools in Illinois report keeping epinephrine injectors stocked in case of emergency, according to data from state Sen. Chris Nybo, R-Elmhurst, who sponsored the legislation.
But Illinois does not require first responders to carry and use epinephrine. LeGere is working with Sen. Nybo on new legislation that would authorize trained first-responders such as police, EMTs and firefighters to administer epinephrine in emergencies. The new bill could be introduced to lawmakers in January, Nybo said.
Annie LeGere grew up with only mild traces of allergies. She used an inhaler to help with bronchial congestion from seasonal allergens. And once, a few years ago, she told her mother her tongue felt slightly tingly after eating sunflower seeds. Her mother advised her to stay away from them, and Annie did, reading the labels on packages before tearing into granola or protein bars, her mother said.
Annie was a typical teenager, who soaked up the last days of summer before eighth grade with her friends. She loved taking bike rides with friends to downtown Elmhurst or along the Illinois Prairie Path. She slathered her favorite foods with ketchup, her favorite condiment. She spent hours filling scrapbooks with photos and sayings that inspired her.
And she and her friends adored sleepovers — staying up late, doing each other's hair, pigging out on pretzels, pizza and popcorn and watching movies — so much that they held them as often as twice each week over the summer, her mom said.
On the night Annie fell ill, she and five of her friends were celebrating the end of summer, with school scheduled to open days later. The girls were sitting in a circle on the floor, playing Cards Against Humanity, when Annie became short of breath and called her mom, said Christina Sapata, one of Annie's friends.
Annie died Aug. 26 surrounded by members of her close-knit family, who were told by doctors that the exact cause of her severe allergic reaction might never be known.
"It was most likely food, but the thing is, we're basically making an educated guess," said Dr. Maureen Quaid, medical director of the Pediatric Critical Care Unit at Advocate Children's Hospital at Park Ridge. "Food, right now in this country, is the number one cause of anaphylaxis."
Anaphylaxis is the immune system's overreaction to a substance perceived as foreign or bad. In mild forms it can cause hives, swelling of the lips, tongue and throat, wheezing or coughing. In more severe cases, it involves a closing of airways to the lungs and loss of consciousness, Quaid said.
In Annie's case, her body's allergic reaction caused her air passages to quickly become blocked, depriving her brain of oxygen. Even after doctors stabilized her vital functions, the brain damage caused during the reaction became fatal, Quaid said.
Generations ago, severe food allergies did not exist in the quantities they do today. Today, research shows that a food-allergy reaction sends someone to the emergency room every three minutes, and every six minutes the reaction is one of anaphylaxis, according to Scott Riccio, senior vice president of education and advocacy for Food Allergy Research & Education, a nonprofit organization.
Medical experts have identified eight foods that account for 90 percent of all food-allergic reactions: milk, eggs, peanuts, tree nuts, wheat, soy, fish and shellfish. But they are still unsure why food allergies are more prevalent today than ever. Some theories being considered are environmental changes, evolution in bacteria found in people's digestive systems, and early or late introduction to certain allergens, Riccio and Quaid said.
What is undisputed is that epinephrine is an effective first line of treatment for an anaphylactic reaction caused by allergies. The drug enters the bloodstream and quickly reverses airway swelling and speeds the heart rate so blood can get to organs faster. There are extreme cases where a patient may need repeated doses, or the epinephrine may not work at all, but those are the exceptions, Quaid said.
In the first few days after her daughter's death, LeGere said she combed through the list compiled by Annie's friends of food they consumed that night — chocolates, popcorn, pretzels — all items Annie had eaten before.
Then LeGere decided to direct her grief elsewhere.
"I have to let that go. There's no way I'll ever know," she said. "I can't ask why anymore."
Instead she has devoted her energy to promoting allergy awareness and pushing for more EpiPens in public. Teens and community members have joined in the fundraising effort.
At Annie's Pink Christmas celebration held at Wilder Mansion in Elmhurst earlier this month, girls dressed up in sparkly gowns and strappy sandals while boys sported pink ties and button-down shirts. The teens mingled, munched on sweets covered in pink frosting and turned in piggy banks filled with donations — some as much as $800 — that they had collected for To the Moon and Back.
A DJ pumped a Taylor Swift song on the speakers and LeGere smiled as the teens rushed to the dance floor.
"I know Annie's looking down and she's looking at all her friends and just loving it," the mother said with tears in her eyes. "I have to believe that she is."