To: Ms. Maryam Sanati, Editor-in-chief, Chatelaine
Ms. Patricia Pearson, Writer
Re: Chatelaine article “It’s just nuts”

I hope you received the Sabrina’s Law documentary about my daughter who died in 2003 at the age of 13 after suffering a fatal allergic reaction. I sent two copies a couple of weeks ago, to the attention of Ms. Sanati, after reading the article “It’s Just Nuts,” which was in the December issue of Chatelaine magazine.

I was completely disheartened by the lack of empathy, sarcastic tone, ridiculous comparisons, and missing facts. I was especially concerned that readers would be left with the impression that the piece was well-researched and painted an accurate picture of what’s going on in Canadian schools and the wider community. It is far from the truth. You say that “schools and parents are cowering in fear,” yet in my travels across North America, I have seen schools working together to keep all children safe.

I wish you had known my beautiful daughter, Sabrina, and I wish I were writing to you today for another reason. Instead, I am writing in hope that you will join me in keeping my promise to my daughter: to educate. While she was on life-support, I told Sabrina that I would do everything possible to prevent a similar tragedy from happening to another family or child.

Had my daughter been alive today, and read “It’s Just Nuts,” she too, like many of your readers, would have been dismayed by such a heartless article. She would have been very disappointed by the adults who wrote and published this piece. She would have told you that children deserve the support of their communities. At the tender age of 10, Sabrina made a radio documentary for CBC Outfront with my sister, Kathleen Whelan, called “A Nutty Tale”. Please listen to it - http://www.cbc.ca/outfront/webfeatures/sabrina/sab_shell.html

You will hear the voice of a creative and knowledgeable youngster using humour, not mockery, to advocate for those at risk of anaphylaxis. It has been listened to around the world and used as a teaching tool. You can tell from her voice that Sabrina did not let her allergies define her, though she did work hard to self-protect and teach others. Today, she may have been a talented writer contributing articles to Chatelaine magazine.

Ms. Pearson is correct in suggesting that peanut allergy has had greater attention from schools and the public in general. This is due to the fact that peanut is one of the most common causes of allergic reactions and death from anaphylaxis. It is also one of the most reported allergies within the school system. Ask any principal. While I agree that more needs to be done to educate the public about other food allergens, “It’s Just Nuts” failed in its attempt to provide any clarity around food allergy, a complex health issue.

In fact, it did more to confuse your readers. The article suggests that food allergies are a myth and there is “over-blown panic” within the community; that parents and schools are “over-reacting” in their efforts to protect kids with food allergies. It is easy to be an armchair critic about the way others manage a health condition when you do not live with it 24/7. While my daughter ended up being one of the few who died from an allergic reaction, my hope is that you’ll see her as more than just a statistic.

Mother-to-mother, let me share Sabrina’s story.

Sabrina’s death from anaphylaxis, while rare, has nothing to do with death from lightning strikes. I found this comparison hugely offensive and ask that you please be considerate of people who have lost children as a result of anaphylaxis. As mothers yourselves, I hope that you would both understand how awful it is to lose a precious child. I cannot describe the devastation that Sabrina’s death caused to my family, her many friends, and her classmates who witnessed the horror of seeing their friend die. Sabrina was my only child.

Unlike lightning strikes, anaphylaxis is not an unpredictable force of nature. Prevention and safety plans can and should be put in place. Knowledge goes a long way to keeping children safe and they have the right to be safe and feel safe while at school. That is what Sabrina’s Law is about. I remember feeling very strongly after Sabrina’s death that if all of the right measures had been in place – epinephrine, emergency preparedness and, 911 – maybe she would be alive today. My sentiments were echoed by Dr. Andrew McCallum, then Regional Supervising Coroner for Eastern Ontario, who sent recommendations to the schools in Eastern Ontario.

Ms. Pearson, my daughter (like most food-allergic kids) knew enough not to “lick her desk,” but that peanut and other food particles could trigger a reaction if there was a transfer of residue from hand to mouth or from a utensil. The day she died, she ate plain French fries thought to be safe, which had been contaminated by a small amount of dairy not visible to the eye.

Tongs which had been used to serve her fries had previously been used to serve French fries with poutine. Without early treatment with epinephrine, her allergic reaction to dairy escalated quickly, causing her throat to close and shut off oxygen to her brain. She was unconscious within minutes. After a day on life-support at the Children’s Hospital of Eastern Ontario, Sabrina died, surrounded by people who loved her very much. My worst nightmare had come true.

As the author of “It’s Just Nuts,” Ms. Pearson, you hold the power of the pen to share your views as a freelance writer. Please use it responsibly. Ms. Sanati, as the Editor-in-chief of Chatelaine, you have the ability to reach millions of people with the right facts, by choosing what goes into print. Instead of creating controversy, let’s try to build bridges, not walls.

I am sharing my letter with Sabrina’s father, Mike Shannon, and the many others I have had the privilege of meeting since Sabrina’s death. These individuals have made efforts to improve management plans in schools, create safer products and environments for those at risk of anaphylaxis, and increase public awareness. They are school communities, politicians (Premier Dalton McGuinty, Kathleen Wynne, Minister of Education, Cheryl Gallant, MP Renfrew-Nipissing-Pembroke, Gerard Kennedy, MP Parkdale-High Park (former Ontario Education Minister), Dave Levac, MPP Brant, John Yakabuski, MPP Renfrew-Nipissing-Pembroke); government representatives (Health Canada, Canadian Food Inspection Agency, and Veterans Affairs Canada); the allergy and medical community (Canadian Society of Allergy and Clinical Immunology, AllerGen), Anaphylaxis Canada, Allergy/Asthma Information Association, Association québécoise des allergies alimentaires, Canadian MedicAlert Foundation, Food Allergy & Anaphylaxis Network, Food Allergy Initiative/Robert Kennedy Jr., Allergic Living magazine, Niagara Anaphylaxis Support & Knowledge and other local support groups, CHEO); industry (King Pharmaceuticals Canada, Paladin Labs, food manufacturers, Canadian Peanut Bureau, Dairy Farmers of Canada, Egg Farmers of Canada); and Canadian and American documentary producers (Lank/Beach Productions, The National Film Board of Canada, Merit Motion Productions, Sharona Schwartz, and Dr. Sanjay Gupta).

Though the article failed to recognize the important work of this wider community over the years, I continue to appreciate the progress that has been made by these organizations and others, too many to mention here. It is too bad that Chatelaine chose to omit many of the good news stories.

Clearly, more work needs to be done to increase Chatelaine‘s understanding of the efforts of such a diverse group, all focused on a common goal: protection of people with severe allergies, especially children.

In closing, I would ask Rogers, the publishers of Chatelaine magazine, to consider the impact of articles such as “It’s Just Nuts”. You have a moral obligation to provide balance and proper facts when highlighting children’s health issues. I urge you to publish another article on food allergy, this time with accurate information and in a respectful way.

I will follow up with you by phone as I would really like to speak with you, Ms. Sanati. I have learned from experience that by talking, misunderstandings and misinformation can be clarified. Now, more than ever, I would like to offer my continued support in educating.

Sincerely,

Sara Shannon
Sabrina’s Mom and Food Allergy Advocate

See Also:

• Sabrina’s Law: School Allergy Laws and Policies
• Can this be Chatelaine? by Gwen Smith

Sara and her former husband, Mike Shannon, lent Sabrina’s name and her indomitable spirit to that legislation. On that terrible last day of September 30, 2003, Sara had made this promise to her daughter: she would do everything possible to prevent another child from dying of anaphylaxis. That promise has become her mission.

Not content with Sabrina’s Law just for Ontario kids, Sara is promoting similar legislation in other provinces and across the United States. She has transformed herself from a down-to-earth woman from little Pembroke, Ont. – a person who was shy before a microphone – to a passionate advocate who speaks from the heart.

Sara has crisscrossed North America, making innumerable friends among allergy support groups as she spreads the message of why schools need anaphylaxis policies that are enshrined in law. Otherwise, she feels, another tragedy like Sabrina’s is waiting to happen. In February, 2007, she traveled to Pennsylvania to meet with allergy mothers from across America and to watch the signing of a law that finally gives children there the right to carry epinephrine auto-injectors at school.

In 2006, she appeared on TV in Seattle to raise awareness of the risks of anaphylaxis and to fire up a local allergy support group about the possibility of school legislation; she’s helped a legislation lobby get started in Texas and has written to U.S. senators and Canadian premiers, appealing to them as parents.

The Food Allergy Initiative, an organization that gives out millions in allergy research grants, picked Sara to receive the prestigious Daniel Patrick Moynihan award for public service at its New York gala in December of 2006. Presenting was Robert F. Kennedy Jr., the father of a food-allergic child.

“It’s so important that we get a Sabrina’s Law
passed in another province or state; these
children need to be protected.”

While appreciative and honored, Sara adds that “balls are wonderful, but we’ve still got to make this a law, we’ve got to make it real.” She berates herself that she’s not doing enough: “It’s so important that we get a Sabrina’s Law passed in another province or state; these children need to be protected. If I could do this full-time, I would go full force.”

But Sara is always doing more than she admits. She worked with two Winnipeg documentary makers to bring “Sabrina’s Law,” the film, to Canadian television in the fall (of 2006). She has her sights on British Columbia and Alberta as the provinces she would most like to have adopt an anaphylaxis law. “If we could just get another of the big provinces on board ….” she says.

Asked what has affected her the most through her journey, Sara answers that it’s the dedicated parents in the allergy community and, of course, their kids. “I’ll never forget being at a conference in Toronto and this little girl came up and gently touched my arm. She said to me, ‘thank you’. Our children are so important, that’s what touches me the most.”

First published in Allergic Living magazine, Spring 2007 (c) Copyright AGW Publishing Inc.
To comment, write: editor@allergicliving.com

To subscribe or order a single issue, click here.

For School Anaphylaxis Legislation and Policies, click here.

Finally, the moment arrived. Bill 3: An Act to Protect Anaphylactic Pupils, was introduced. “Yea,” “yea,” “yea,” came the chorus of votes, as politicians from three political parties rose, one by one, to unanimously pass the law that was now dubbed Sabrina’s Law.

In an outpouring of joy and emotion, the gallery watchers spilled out the upper exits and into the hallway. There, smiles mixed with tears as the import sunk in: Canada’s most populous province would now require that every school principal establish an anaphylaxis plan including: strategies to reduce risks of allergen exposures and the training of staff for allergy emergencies and on the use of auto-injectors. No more would anaphylaxis policy depend on the kindness of principals; it was the law.

At the centre of the hallway hoopla stood Cindy Paskey, president of the Niagara support group NASK,  the woman who gave up her day job for 2½ years to spearhead the grassroots campaign of letter-writing and petition-signing for this law. She’d found a kindred spirit in Dave Levac, the MPP who introduced Bill 3 and fought to see it finally become reality. Today, Paskey’s most vivid recollections of that momentous day in May are of the vote “like music to my ears,” and of the emotions in meeting the Shannons whose courage “turned a tragedy into triumph”.

Another snapshot etched in memory is of longtime anaphylaxis advocate Marilyn Allen, “who congratulated me and then told me quietly that that day was the birthday of her daughter.” Allen’s daughter Robyn died of an anaphylactic reaction to peanut in March, 1990. On May 16, 2005, Robyn would have turned 31. Paskey took the coincidence as “a sign of rightness in the universe.”

Sabrina’s Law really was a team effort. It was so important that Sara Shannon and her former husband, Mike, came forward to allow their daughter’s name to be used on this law. She became a face for an otherwise anonymous condition that so many still didn’t understand. When approached by Anaphylaxis Canada, also working to pass Bill 3, Sara and Mike Shannon didn’t hesitate to get involved.

Sara had promised her dying daughter that she would work “to prevent this fate from happening to another child.” And she has, criss-crossing North America in support of anaphylaxis laws in provinces and states, telling the story of Sabrina’s Law and how accommodations can work.

Paskey sees a ripple effect of the law as well in the way the food manufacturers are now producing allergy-safe foods. And she hopes that its influence will grow and spread to colleges and workplaces. “They could provide risk-reduction measures, training on emergency response and on careful food preparation in cafeterias. That’s where I hope to see it go.”

Reflecting on the impact of Sabrina’s Law as it hits the fifth anniversary, Paskey strongly believes “it has saved lives”.

She has heard stories from public health nurses and parents who’ve spoken of children having reactions at school and of staff recognizing the symptoms and responding properly – in each case, an auto-injector was used promptly. What gives Paskey the single biggest sense of accomplishment is to see that allergic “children can be safe, feel safe and be included at school.”

The Sabrina Award

Anaphylaxis Canada has announced The Sabrina Shannon Memorial Award for Canadian students. The award is dedicated to the life of Sabrina Shannon, the inspirational teenager who tragically suffered a fatal anaphylactic reaction in 2003.

Two awards of $1,000 each will be granted: one for a student entering the first year of post-secondary education, the other for a student already in a post-secondary program.

Applications will be evaluated on a 500-word essay that describes a student’s efforts to raise awareness about allergies and anaphylaxis. June 15 is the deadline for submissions.

For more info, contact info@anaphylaxis.ca. Download the application at www.whyriskit.ca.

First published in Allergic Living magazine, Spring 2010 5th anniversary edition.
To order that issue or to subscribe, click here.

© Copyright AGW Publishing Inc.

See Also:

• Sabrina’s Law: School Allergy Laws and Policies
• Our award-winning Sabrina’s Story
• Sara Shannon’s Journey