Alex Donley was a tender-hearted 6-year-old who dreamed of someday being a paramedic when he was stricken with an E. coli infection in 1993 after eating a hamburger made from contaminated ground beef. Four days later, he died in a hospital room after suffering a horrific bout of hemolytic uremic syndrome, a kidney disease stemming from the worst E. coli infections.
In the wake of Alex’s death, his mother, Nancy Donley, chose to dedicate her life to fight for improvements to the safety of the U.S. food system. She took Alex’s story to whoever would listen: food companies, trade groups, media, politicians, FDA and USDA.
After starting the nonprofit STOP Foodborne Illness, Donley and other parents of foodborne illness victims worked to advocate for tougher regulations on food contamination while educating consumers about proper food handling techniques to prevent illness.
Throughout her work, Alex’s story was the main driver of Donley’s activism. His story made others feel the impact foodborne illness has on families in a way that reciting statistics never could.
In the U.S., discussions of foodborne illness often refer to CDC estimates that 48 million Americans are sickened by foodborne pathogens each year, with as many as 3,000 dying as a result. But the real-life story of one of those 3,000 victims can do more to communicate the true nature of foodborne illness outbreaks, as food safety advocates such as Donley discussed on Tuesday at the International Association of Food Protection (IAFP) in Indianapolis.
“After Alex died, my mom said that not only did she lose a grandson, she lost a mother, because a part of me died when he died,” Donley told the audience at IAFP.
She referred back to Alex’s dream of becoming a paramedic to help others and save lives. Through sharing his story, his dream has come true.
“Because people have heard his story, lives have been saved, and he has gone on to help others the way he wanted to when he was 3 years old,” she said.
Donley was part of a panel discussion on the impact that stories have on communicating the effects of foodborne illness on families and included presentations by a handful of other victims and their family members.
The presentations were kicked off by Dr. Benjamin Chapman, food safety professor at North Carolina State University, who spoke of the importance of stories in eliciting emotion — and eventually changes of perspective — from those who hear them.
Chapman used the example of the trichinosis scare from undercooked pork that caused his grandmother and an entire generations of cooks to overcook their pork chops. The media of the time had shown so many stories of victims infected with worms from the disease that no one dared to risk eating undercooked pork.
Similarly, stories like Alex’s have worked to redefine the cultural attitude toward undercooked hamburger and any other food produced with lax food safety standards.
Another story presented was that of Dana Dziadul, who, in 2001, fell ill at age 3 with an infection of Salmonella Poona in her bloodstream after eating contaminated cantaloupe. Now 16, Dziadul has spent the past five years speaking to audiences about her experience.
A classic picky eater at that age, Dziadul said she liked three foods: mac and cheese, grilled cheese, and cantaloupes. At a buffet with her family, she chose to pile her entire plate with cantaloupe.
The next day, she had a headache, which eventually progressed to a stomach ache, a fever of 104 degrees F, cramping, and bloody diarrhea. Her parents took her to the emergency room, but it was a week before she was diagnosed with a blood infection from Salmonella.
Dziadul recovered in time, but years later she was still stricken with difficult joint pain. It was even longer before she was diagnosed with reactive arthritis, a condition brought on by her infection.
“It’s been 13 years since my Salmonella illness, yet I still suffer from it because of reactive arthritis,” she told the audience.
Dziadul has written a forthcoming children’s book about her experiences entitled, “Food Safety Superstar.” She said that her relationship with her younger sister, Jenna, inspires her to continue advocating for food safety.
“I can never imagine Jenna going through the pain and suffering that I had, so I want to continue to support food safety causes,” she said.© Food Safety News