Villagers of Distinction: Sara & Mike Shannon

The Villager of the Month accolade has gone to a person or group that has done something interesting or special for those with allergies. It has honoured several people but as I award this accolade this evening I am struggling with the title.

Let me explain ...

Today I posted about how I thought I almost received a peanut cookie at a café. Though I do not have any food allergies, I seem to be vicariously allergic to peanut through my daughter. I react to peanut with an urgency that would suggest I am allergic myself. It is downright scary to think that I could accidentally consume something that would cause a possibly fatal physiological response. It is scarier still to imagine my daughter have that same reaction.

Tonight Gina Clowes of Allergy Moms emailed me. She reminded me that my Villager of the Month accolade was again due and her nominees are an obvious recipient for any and all allergy-related accolades. My concern was that a 'Villager of the Month' accolade just didn't seem appropriate given all that they have been through, and all they have done for the allergy community.

Many of you will know the story of their daughter Sabrina. The best summary of the Shannons' dedication to their daughter is summed up by Allergic Living, "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."

Sara has followed through on that promise.

For those who have children with anaphylaxis, Sara and Mike should serve as your inspiration. Collectively, our worst fear is that we might someday lose our child to a fatal allergic reaction. The Shannon's have turned their tragic loss into triumph and proved that all you can do in life is make the most of any situation, no matter how dire.

Gina Clowes was one of the first people to ever comment on NoPeanutsPlease. She counseled me to think of those with allergy to things other than peanut, and highlighted the story of Sabrina and her parents. After Gina's post I lay awake at night for about a month and wondered if I would have the courage to follow in the Shannons' footsteps. In those initial days after our daughter's diagnosis the possibility of a fatal reaction were of course exaggerated in my mind.

Madeleine would cough at night and my immediate response was to rush in and make sure she was not having an allergic reaction. It sounds crazy ... and it was.

Over the ensuing year my thoughts have returned many times to the Shannons.

My pittance of an accolade cannot begin to demonstrate my respect and gratitude for what they have done. We live in Vancouver and when Madeleine goes to school in three years she will be safer than she would be if she entered school today. Because of the Shannons' support for bill M210 here in British Columbia there are new anaphylaxis policies in our schools. Though we did not secure a west coast version of Sabrina's law, the support of the Shannons gave credibility to the efforts of PACT.

Though I hope to never follow in their footsteps, I am deeply moved by their response to the tragic loss of their daughter. Though I cannot even fathom the loss of Madeleine, I would hope that I could have a fraction of the Shannons' courage.

In honour of Sara and Mike Shannon I have renamed my 'Village of the Month' award. Henceforth the accolade will be called 'Villagers of Distinction'. The word 'month' connotes a point in time. The Shannons have given so much to the allergy community that any accolade, no matter how small, requires an element of permanence. It is not melodramatic to say their through their efforts they have undoubtedly saved the lives of multiple children.

Their efforts in BC may even someday save Madeleine's life and that possibility alone makes me forever grateful for their courage and their contribution to the allergy community.

Thank you Sara and Mike. You are truly an inspiration.

Villager of the Month - Summer 2007

This spring I started a new series called Villager of the Month. The intent is to recognize people and organizations who do special or interesting things to help those with food allergies. This month I have been featured in Allergic Living. I wrote an article about the theory behind this very concept and the reception has been great.

The latest recipient of the Villager accolade dovetails nicely with my post about the work that PACT had done with Bill M210 in B.C. The Food Allergy Initiative is a non-profit agency that raises funds toward the effective treatment and cure of food allergies. It also works to raise awareness of the seriousness of food allergy.

In August the FAI was a major force behind New York Governor Elloit Spitzer's decision to sign into the law the Allergy & Anaphylaxis Management Act of 2007 (AAMA) . The FAI's contribution was significant. "During the past year, FAI led a coalition of food allergy support groups and parents across New York State to achieve the passage of the AAMA. In March 2007, as a result of FAI’s leadership of a coalition in New Jersey, a similar bill, PL. 2007, c.57, was signed into law."

“This vital legislation will save lives,” said Robert Pacenza, Executive Director, FAI. “If a food-allergic child accidentally ingests even a minuscule trace of the wrong food, it can trigger a reaction that can kill within minutes. The AAMA will provide New York parents and schools with sensible guidelines to help keep these kids safe. FAI is proud to have been the organizing force behind this effort.”

Congratulations Robert and team. Great work on this legislation!

M210 Lives On ... In Spirit

This past spring bill M210 made its way through the legislative process here in British Columbia. As a result of a strong grassroots effort led by a group called PACT, the failed bill actually lives on, at least in spirit, via a new anaphylaxis directive handed down this week by Education Minister Shirley Bond.

“Children with life-threatening allergies need to be safe in B.C. schools, and our direction today is for all school districts to take immediate steps to ensure all students are protected,” said Bond. “Boards of education will now be required to have school-based anaphylaxis policies and practices that meet rigorous provincial standards.”

This is great news. PACT was my villager of the month for June and I am very pleased to see that in the absence of a true B.C. version of Sabrina's Law we do have protection for our allergic children in the province's skills.

Kudos to all of those involved in the lobby effort to make this happen.

Villager of the Month - June 2007

This spring I started a new series called Villager of the Month. The intent is to recognize people who do special or interesting things to help those with food allergies.

For June 2007 I wanted to recognize the efforts of a group of concerned parents in British Columbia. Under the name Protecting Allergic Children Today (PACT), Caroline Posynick and other members of her organization spearheaded a letter writing campaign to MLAs and government officials in support of David Cubberly’s proposed anaphylaxis legislation.

Though Bill M210 failed to advance after its second reading, the government is certainly aware of the issue of allergic children in schools and that is largely due to the efforts of PACT and its supporters.

You can learn more about PACT or Bill M210 on the organization's website.

Bill M210 Update

As you recall, Bill M210 is making its way through the legislative process here in British Columbia. I recently posted about the bill and also how you could help. Titled the 'Anaphylactic Student Protection Act 2007', the proposed law would make schools a safer place for allergic children.

On May 7 Sara Shannon will be in attendance at the BC Legislature. David Cubberly, who has put forth Bill M210 will introduce Sara and tell the story of her daughter Sabrina, who left us several years ago as a result of an anaphylactic reaction in her school.

We are all hoping that Bill M210 does make it to its second reading on May 28. For that to happen we need the support of the Liberals who have a majority government. Through my network I have personally contacted 10 Liberal MLAs including 4 ministers.

Here is the text of the letter I sent:

Dear _________,

I am writing to you in an effort to build support for the "Anaphylactic Student Protection Act, 2007" as tabled by MLS David Cubberly in March 2007.

This past December our 21 month old daughter had an anaphylactic reaction to peanut. It was terrifying. She did not actually even eat a peanut - she ate a gingerbread cookie that came in contact with a peanut butter cookie from a friend's Christmas baking exchange. Within 60 seconds she was covered in hives and losing her ability to breathe. Without the quick response of the paramedics we may have lost our little girl.

Just this past weekend our daughter was rushed to the hospital again. Without my wife's quick response, including the administration of an EpiPen epinephrine auto-injector, there is no way to know how far this allergy would have progressed.

It has been said that one of the hardest things about anaphylaxis is convincing non-allergic people in our daughter's life that this is real. As we have all seen with the tragic death of Carley Kohnen in British Columbia recently, these allergies are very real and very dangerous.

In an effort to mitigate risk, we have educated ourselves on the allergy and rid our home of peanut products. That being said, there are others in the community that we will come to rely on heavily for our daughter's safety, especially the staff in our schools. In many cases emergency response is required in a matter of minutes and without without clear emergency preparedness policy and procedures out daughter is at risk of a fatal reaction.

In his first reading of the Anaphylactic Student Protection Act, 2007, MLA David Cubberly mentioned the case of Sabrina Shannon who died at school after an anaphylactic reaction. There are many other cases just like hers. These children face considerable risk in a school environment but through awareness, policies and emergency response preparedness this risk can be significantly reduced.

People often say that this only affects 2% of the population but that is simply not true. These children have parents, friends and relatives that would be devastated should they have a fatal reaction. I would like you to consider this math ... if the the death of an anaphylactic child directly affected even 20 friends and family members in the community, then it is reasonable to estimate that over 40% of your constituents are directly and positively impacted by this legislation. Anaphylaxis is not just the concern of a small, vocal minority. It is becoming pervasive in our community and this will only increase given that the incidence of food allergy growing at an alarming rate.

I ask that you to support the "Anaphylactic Student Protection Act, 2007". It is sensible, pragmatic policy that will save the lives of children. There is also considerable support for the implementation of this policy. Organizations such as Anaphylaxis Canada have deep experience in supporting schools with education and safety programs. They would be eager to help. Teachers, principals and staff will not be left alone.

It takes a village to support children with anaphylaxis - you would do these kids a kind service by voting in favour of this bill.

Thank you in advance for your support ... and for your vote!

M210 Needs You

Recently I posted about the proposed anaphylaxis legislation in BC. Entitled the "Anaphylactic Student Protection Act 2007", Bill M210 was proposed by MLA David Cubberly and has passed through its first reading. The next step is the upcoming second reading on April 16.

I urge you to get involved - regardless of where you live. There is a website dedicated to Bill M210 that allows you to look up contact information for MLAs, get more information on the actual bill and gather information from an FAQ.

The coolest feature of the site is labeled "a sample email in support of Bill M210" off the main page ... the link pulls up an pre-written, pre-addressed email that you can send to the Minister of Education and the Premier ... in about 5 seconds you can support this pending legislation.

Please send an email in support of Bill M210