In the radio documentary she made, Sabrina Shannon, just shy of 10, holds the microphone in front of her mother and asks what it’s like to have a daughter with allergies. Then she adds: “Do you think I’m beautiful?”
With mock earnestness, Sara Shannon replies, “I think you’re probably the best-looking girl in the world.” Sabrina collapses in a fit of giggles.
SOME KIDS just have that energy, that sparkle in the eyes, that irrepressible spirit. Sabrina Shannon was one of those, a pure pistol of a kid. Her personality shone through in the radio documentary she produced with her aunt, Kathleen Whelan, which originally aired on a CBC Radio program back in 2001.
The documentary was a first-person narrative about living with allergies. Sabrina, who was at risk of anaphylaxis to peanut, dairy products and soy, proved a natural at the mike, interviewing her girlfriends, her mother and holding forth about her allergies. It was a great 12 minutes of audiotape.
But this anecdote takes place in the past tense. Sabrina’s tale turns, sadly, to one of tragedy. She is the food-allergic kid who didn’t make it, the bright light extinguished.
On September 30, 2003, Sabrina died in hospital following an anaphylactic reaction. Her mom, her dad, her Aunt Kathleen, her many other relatives and friends have been devastated by her death. But this is also a story of hope born of tragedy, of an organized effort to do justice to Sabrina’s memory by making sure no other child suffers a similar, likely preventable death.
Sabrina, the girl who had her final lunch from the high school cafeteria at the age of 13, became the rallying point for a new law that requires anaphylaxis safety plans in schools in the province of Ontario. It is legislation that would come to influence change in schools across North America.
She Thought It was Her Asthma
On September 29, 2003, Sabrina balked at her mother’s efforts to have her take yet another allergen-free sandwich to school. It was the end of the teen’s first month of Grade 8 at Bishop Smith Catholic High School in Pembroke, a small Canadian city in the Ottawa Valley. She told her mom that the previous week, she’d eaten French fries once in the cafeteria after checking that they didn’t contain any of her allergy triggers. The fries were safe – and tasty – and she wanted eat them again at lunch today.
Sara Shannon resisted at first, but she also trusted Sabrina’s judgment. Her daughter had always been responsible about her allergies, asking the right questions before eating, always carrying her epinephrine auto-injector in her backpack, along with the puffer for her asthma. Sara agreed.
Around 11:40 that morning, Sabrina and her best friend went to the cafeteria, and Sabrina ordered fries after again making sure that they were cooked in vegetable rather than peanut oil.
In the class after lunch, Sabrina began to wheeze. Thinking she was having an asthma attack, the teen headed for the school office at the other end of the building. By the time she got there, Sabrina was having serious respiratory trouble, and kept repeating, “it’s my asthma.”
Dairy Contact and the Tragedy
A teacher raced to Sabrina’s locker to get her EpiPen auto-injector in case it was in fact her food allergies; school officials called an ambulance. Sabrina collapsed and lost consciousness, going into cardiac arrest before the device could be administered, before the ambulance arrived.
The girl’s heart was restarted at the local hospital and she was airlifted to the Children’s Hospital of Eastern Ontario in Ottawa. Sabrina’s young heart and lungs were strong but she’d suffered significant brain damage.
Later, it would be determined that her devastated condition was the result of anaphylaxis due to food allergy. The coroner posited that the allergic trigger was dairy protein, which Sabrina would have been exposed to through cross-contamination from tongs used to lift her fries. Those same tongs had also been used to serve orders accompanied by poutine, the French Canadian accompaniment of gravy and melted cheese curds. She would have been allergic to the curds.
On September 30, a day after her reaction, Sabrina was removed from life support and died.
At a press conference in Ottawa almost a year after Sabrina’s death, Dr. Andrew McCallum, the chief coroner for Eastern Ontario, called for the implementation of comprehensive anaphylaxis management plans in the schools, and said that high schools, in particular, needed to pay better attention to the need to protect allergic children such as Sabrina. All schools, he said, should keep epinephrine auto-injectors available in the school office and staff and teachers must have proper training in the use of the device.
Then Sara Shannon stepped up to the microphone to tell the assembled media that, while her daughter lay dying, “I made a promise to Sabrina that I would do whatever is possible to prevent this fate from happening to any other child. Please help me to keep my promise,” she said softly.
The Fight for Sabrina’s Law
Sabrina Shannon died two days before the Liberal Party was voted into power in the province of Ontario. The party even had a line in its platform promising that, if elected, it would require public schools to have anaphylaxis plans based on province-wide standards. Such words were encouraging to those who had been lobbying, even before Sabrina’s death, to pass a law requiring school allergy procedures.
Dave Levac, a Liberal MPP for Brantford, Ontario and a former high school principal, first introduced a private member’s bill to protect anaphylactic students in provincial elementary and secondary schools in June 2002. While many schools had anaphylaxis plans in place, he thought it was dangerous that the standard was not consistent.
His view is that uniform procedures will avoid “the arguing between schools and parents, the gnashing of teeth in the protection of a child.”
His first bill died on the order paper under a Conservative government, as did his next effort. But with the Liberals barely sworn in to office, Levac’s third attempt – the proposed Act to Protect Anaphylactic Pupils – became Bill 3, numbered near the top of the pile.
The MPP and Cindy Paskey, then president of the Niagara region’s anaphylaxis association, had worked together since 2002 – organizing letter campaigns and petitions. They were elated as Bill 3 passed second reading on December 4, 2003. Now it just needed to go to a committee for a consultation process before a final reading enshrined it in law.
But for more than a year, the bill simply sat. By March 2005, Paskey and Laurie Harada, the executive director of Anaphylaxis Canada, were concerned: the clock was ticking on Bill 3 – if it didn’t get passed during this session of the legislature, it would die.
Then the Shannon family stepped in to help, and Sabrina soon became the human face of this legislation. Anaphylaxis Canada dubbed Bill 3, “Sabrina’s Law,” driving home Shannon’s point from that Ottawa press conference that no other child should suffer her daughter’s fate. Sara Shannon and Laurie Harada met with government officials who were receptive to their concerns.
After all the delays, the government suddenly scheduled the standing committee’s review for that spring. On May 16, 2005, the final vote on Bill 3 was held in the legislature. As parents and allergic children watched intently from the public gallery, all three parties voted in favor of Sabrina’s Law. It passed unanimously.
Sabrina’s Law Viewed as Model
The law, which took effect January 1, 2006, requires Ontario school boards to have all principals implement anaphylaxis plans that include: strategies to reduce exposure to allergens, procedures to communicate to parents, students and employees about life-threatening allergies, and regular training on dealing with life-threatening allergies for teachers and staff.
In addition, principals are required to: develop an individual plan for each student at risk of anaphylaxis, maintain a file that lists that student’s prescriptions and emergency contacts and ensure that parents enrolling pupils supply information on a child’s allergies.
What the Liberal government didn’t realize, is that the progress of Sabrina’s Law was not just watched by relatives of anaphylactic students in Ontario, but it was also drawing attention across the United States and the rest of Canada.
In 2004, Sabrina’s aunt Kathleen Whelan wrote to Robert F. Kennedy Jr., who was on the board of the Food Allergy Initiative (now FARE), the nonprofit research and education organization. She had learned that Kennedy has a son with peanut allergy and decided to let him know about Sabrina and how the family wanted to tell her story so that people would appreciate the gravity of anaphylaxis.
Kennedy was moved. For its annual gala journal, he asked FAI to publish a two-page story that Whelan, a writer, had composed about Sabrina’s death. The organization’s gala in November 2004 was held at New York’s Plaza Hotel and was a star-studded affair. Among the guests were Kennedy, Ron Perelman, chairman of Revlon, and his then-wife, the actress Ellen Barkin. As guests dined and raised tens of thousands of dollars for research, they also read Whelan’s words about her niece – and the hole her death left in so many hearts.
Sabrina’s family impressed FAI and Rachel Sanzari, who was its administrator. “It’s just amazing that they took a tragedy and used it to make anaphylaxis an issue,” she said in May 2005. A law in a province the size of Ontario “will serve as a model here in the United States.” [Editor’s note: Today, there are several comprehensive state allergy laws and policies in the U.S., and a section in the federal FAAMA act of 2011.]
“No matter where you are,” said Anaphylaxis Canada’s Harada, “the issues are very similar, the emotional aspect and what’s going on in schools. So many jurisdictions are looking at what’s happening here because nobody seems to have any law. There are guidelines, there are directives, there are ministry of education policies, but there’s no law. This is precedent-setting.”
In the end, reminds Levac, Sabrina’s Law is about saving students’ lives. It’s a point that is hard to forget around Sara Shannon.
“I loved Sabrina so much. I miss her terribly,” she says. “We have to make sure this doesn’t happen to another child. When everything is done, everything is in place, every procedure, every emergency plan, then if a child dies, we can say, ‘there was nothing we could do’. But when we know that there is something we can do to prevent this, we can’t live in a world of denial.”
Sabrina’s Law fulfills a promise that Shannon desperately wanted to keep.
Reprinted from Allergic Living’s Spring 2005 issue. Updated February, 2011.