(NEW YORK) — In the days before Nona Narvaez needed to testify at the Minnesota State Capitol in favor of legislation that would require all ambulances to carry emergency epinephrine, her son with severe food allergies was only 3, and her fellow advocates were worried about finding babysitters for their own food-allergic toddlers.
But Narvaez knew what she was doing. She told her team to forget the babysitters and bring their children to St. Paul.
“That’s what it was all about,” she said. “These little kids were running around the Capitol. It was perfect because it put a face to the issue. Frankly, a cute kid is going to be more persuasive than a middle-aged lobbyist.”
Not long after they testified, then-Gov. Jesse Ventura signed the bill into law.
That was 2002. Since then, ambulances have administered the injections 1,523 times in Minnesota, and Narvaez has moved on to other food-allergy issues as her now 14-year-old son faces new challenges. Since then, she and her nonprofit, the Anaphylaxis and Food Allergy Association of Minnesota, have worked on the federal food labeling act, St. Paul restaurant safety and even airline safety.
The number of U.S. children diagnosed with food allergies rose 18 percent between 1997 and 2007, according to a 2008 Centers for Disease Control report. As the population of children with food allergies gets older, their mothers have been on the front lines, demanding that state legislatures pass laws protecting their fragile children as they approach new hurdles such as college life and plane travel.
In 1998, when food allergies were less common, most states did not allow basic EMTs to carry epinephrine, which can stop someone from having a life-threatening allergic reaction called anaphylactic shock. Today, with cost still an issue for some, only four states prevent their EMT basics from carrying epinephrine auto-injectors, commonly known as EpiPens (about $40 each), and most of those law changes were driven by passionate mothers.
Ann Thompson worked to make Illinois one of the first states to require ambulances to have EpiPens in 2001 and has since moved onto her “next mission,” she said. Her son is now 18 and a freshman in college, so she’s working on educating college cafeterias on allergen cross contamination and the risk of anaphylaxis.
“We’re the grandmas of the group,” Thompson said, adding that her son almost died shortly after his birth and went into anaphylactic shock when he was 7. “When a parent experiences things like that, it really gives you a heart and a zeal to make a difference not only in your child’s life, but in any child’s life. It’s a crusade.”
In New Jersey, Rachel Bevento found out just how important EpiPen legislation could be when her 2-year-old bit into his first peanut butter and jelly sandwich and had a severe allergic reaction. He needed one epinephrine injection in the ambulance and another one at a nearby hospital.
Days after her son’s reaction, Bevento got a call from a local paramedic explaining that the EpiPen was placed in the ambulance eight days beforehand.
Even though New Jersey passed its EpiPen legislation in 2003, it wasn’t implemented until 2007 after allergy mom Allison Inserro started making calls and emails to the health department.
“I get chills every time. We were just so fortunate,” Bevento said. “If you dial 911, you assume they’re equipped.”
Her son is now 8, and his best friend has the exact same food allergies, she said. Two of her closest friends’ children were also diagnosed with nut allergies.
“It’s extremely helpful because it is so overwhelming to suddenly know that some food you kept in the house and you yourself have eaten for years can make your child so sick,” she said.
Jennifer Jobrack knows the feeling. Her 7-year-old has a severe food allergy, and she found herself switching careers to work at the Food Allergy Initiative in Lake Forest, Ill., which has since been renamed FARE, for Food Allergy Research and Education.
“As a mom, I was already living this issue every day,” Jobrack said. “Once you get a diagnosis, it changes your life.
“So the opportunity to take that work I was living and do it professionally and help the larger food allergy community was really appealing to me.”
Copyright 2012 ABC News Radio
Dora Scheidell, KSTU
Jacque Wilson, CNN