They keep smiling for Abbie Benford
H opkinton — The Benford family had done everything by the book since daughter Abbie was diagnosed with food allergies years ago, as a toddler. Abbie had learned early that milk, peanuts, and tree nuts such as pecans and walnuts were forbidden. Food labels were carefully read, waiters dutifully warned.
Using grapefruits, Stephen and Amy Benford trained Abbie, her friends, and her brother David how to inject epinephrine, the drug of choice for treating a life-threatening allergic reaction called anaphylaxis. Symptoms can include a tightening of the airways, swollen throat, shock, rapid pulse, and dizziness or loss of consciousness.
“Abbie carried an EpiPen everywhere,” her mother says, of the injector. She never had to use it because she never experienced a severe reaction.
But on Dec. 18, 2013, Abbie died from anaphylaxis, eight days shy of her 16th birthday.
Since Abbie’s death, her family and friends have embarked on a campaign to educate others about food allergies and to fund research into early detection of anaphylaxis. “What’s missing is early detection,” says Stephen, an executive for a tech company. “We want to create a device that could have saved Abbie. Right now, early detection is in the hands of people who aren’t always qualified to recognize it: the patient, family, and friends.”
On Saturday, Dec. 14, Abbie was excited. Her birthday loomed and her parents were taking her, a cousin, and some friends to spend the night in Boston. They’d shop, ice skate on Frog Pond, and stay at the Boston Marriott Copley Place. Her birthday cake was already in the car.
The night before, she had tweeted: “I’m just gonna apologize ahead of time for all of the snapchats, instagrams and tweets this weekend from my friends and I.”
The next day, she ate a late breakfast of scrambled eggs, and went upstairs to her room with her cousin and a friend. Soon after, Abbie, who also was asthmatic, complained of indigestion and then of difficulty breathing. She sent her friend downstairs to get her dad.
“I heard her wheeze and I grabbed the nebulizer,” says Benford. Then he called 911. Amy Benford injected her daughter with an EpiPen, and then another, but Abbie had lost consciousness and was in cardiac arrest. About 20 minutes passed between her first symptoms and cardiac arrest.
Her father and a former firefighter who was working a construction job in the Benford home began CPR on her, to no avail. Six minutes after the 911 call, EMTs arrived.
It was too late. Abbie remained on life support for four days at Children’s Hospital. Family and friends, even her beloved Labradoodle, Oscar, poured in to say goodbye. They sang happy birthday. On Dec. 18, she died.
The Benfords do not want their daughter’s story to end there. There was so much more to Abbie than her allergies. A sophomore, she played goalie on the Hopkinton High School field hockey team. She had lots of friends, and was the type to ask the new kid to join her for lunch in the cafeteria.
“She always did what she felt was right even if that meant she did it alone,” a close friend, Emma Zack, said at her funeral.
At 5-foot-3, Abbie was petite, but had a voracious appetite. “She’d order two burgers and chips,” says her mother, a teacher in Southborough. “She ate like a truck driver, but she was always careful about it. She never took chances.” After her death, her parents could find no trace — crumbs, wrapper, or container — of any forbidden food.
“It’s incredibly frustrating,” says Stephen Benford, who believes there must have been some sort of cross-contamination that triggered her reaction.
At a fund-raiser on Aug. 10, Benford gave the crowd a summary of what went wrong, and how he hopes the money raised through their fund, KeepSmilin
4Abbie, can help prevent other such deaths. The injections didn’t work, he said, because her anaphylactic reaction had progressed too far, too fast.
“It is our view that auto-injector technology is outdated and inadequate to stop anaphylaxis because detection requires correlation of symptoms by laymen, and the speed of anaphylaxis often blurs the assessment process,” he told the crowd of 350 who gathered at Hopkinton High. “We believe the problem can be solved through early detection, a familiar approach in medicine but one that is wholly absent from anaphylaxis treatment.”
In an interview in the family’s kitchen, where the refrigerator door is covered with photos of Abbie and her friends, Benford was more blunt: “In some respects, we feel betrayed by the medical community. The problem is sometimes the [anaphylaxis] symptoms can be something else. Abbie’s system shut down before we even had a chance to assess and treat her.”
Dr. Michael Pistiner, a pediatric allergist for Harvard Vanguard Medical Associates whose son has food allergies, agrees that physicians need to better spread the word on such childhood allergies, which he calls “a growing national concern.” According to the Centers for Disease Control and Prevention, 4 to 6 percent of children in the United States have food allergies.
“These are conversations we really need to have with the families we care for,” Pistiner says. “Not all physicians who manage these kids convey the fact that food allergies can be severe and result in death.”
But such cases are rare. Though there isn’t a central registry of anaphylaxis deaths, Pistiner says that “based on recent data from a [United Kingdom] study, we can roughly project that about 20 children a year who are 18 and younger die.” And he believes such deaths can be decreased if patients, families, and peers are educated about allergies and anaphylaxis.
Pistiner is co-creator of Allergy
Home.org, an online site to educate the public. The Benfords have partnered with the site to spread food allergy and anaphylaxis awareness throughout the community, at schools and colleges, road races, and camps.
Abbie’s fund has also provided training at camps with kids and counselors, and on Aug. 26, Pistiner will speak to seniors at Hopkinton High School, where AllergyHome.org plans to pilot an allergy curriculum as part of a wellness class. At her school, Woodward Memorial, Amy Benford has created an awareness campaign, along with the school nurse.
KeepSmilin4Abbie is also providing scholarships for two seniors at Hopkinton High who display the traits that Abbie embodied: school spirit, positive attitude, empathy, and friendship.
“The Benfords are taking the tragedy and turning it into something awe-inspiring and uplifting,” says Pistiner. “In the majority of cases, prompt treatment with epinephrine works. This was a lightning strike case.”
But an early detection sensor is the heart of the Benfords’ mission. So far, they’ve raised $80,000 and know they need much more for research into technology that could give the patient a warning in cases of severe allergic reactions. Their fund falls under the auspices of the nonprofit Foundation for MetroWest.
The Benfords and supporters are selling purple T-shirts and rubber bracelets with KeepSmilin4Abbie on them, and some of Abbie’s friends have done their own fund-raising. Julia Thissell, who had known Abbie since second grade, raised $3,000 — $1,500 at a “dress down” day at the Rivers School in Weston, which she attends, and $1,500 through a cut-a-thon at a salon run by a classmate’s mother.
“Abbie was probably the happiest and nicest person I’ve ever met,” says Thissell. “She made everyone feel loved.”
Hopkinton High, from which David Benford recently graduated, had a Keep Smilin’ Day in her honor, with students wearing Abbie T-shirts. Friends have tweeted photos of her purple bracelet from various locations around the world, including Paris, the Hoover Dam, Israel, the Galápagos Islands, Russia, Tanzania, and elsewhere.
“Abbie lived life to the fullest,” says her mother. “We always thought she’d do something big. We’re honoring her with this fund to help others. This will be her something big.”