Spring is here and summer is around the corner!
At Kawasaki Disease Canada, we are very happy to see the change in seasons! Not only does spring bring with it warmer weather and more occasions to spend time outside with family and friends, it also sees an end to typical Kawasaki disease "season".
Kawasaki disease can strike at any time, though, so we consider raising awareness to be urgent all year round. We appreciate your efforts to help in this regard. Please share this newsletter with your contacts using the social media links or "Forward this email" link at the bottom of the newsletter.
In this edition of our newsletter, we are looking for your feedback about what you would like
to hear from Kawasaki Disease Canada via our social media channels. This will allow us to enhance and design an effective social media and communication strategy based on your needs.
Also, in this newsletter we will continue to highlight the story and passion behind our volunteer Board of Directors. This edition, we are pleased to introduce you to, well, me...or more importantly to Dylan.
Thank you for your continued engagement.
Together, we can save a child's heart.
President, Kawasaki Disease Canada
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Spotlight on our Board of Directors
Elizabeth Heald,
President
Eight years ago we had never heard of Kawasaki disease. The first time we did was May 16, 2008, less than 24 hours after our son had suddenly collapsed in our bedroom and died of a massive heart attack. The coroner called to say that they had ruled out meningitis and flesh-eating disease as possible causes of the huge coronary aneurysm that had caused Dylan's heart attack. He went on to say that they suspected Kawasaki disease to have been the culprit. How was this possible? How could there exist a disease with such devastating consequences that we had never heard of? Surely we had vaccinated against all the known childhood diseases, hadn't we? How and when had it infiltrated our seemingly healthy 6-year old? And, the one that would haunt us: how did we miss the signs and symptoms?
During the fifteen months we waited for the autopsy and toxicology reports, we requested, received and pored over every speck of Dylan's medical history. Not that there was much. A few trips to the doctor for fever or conjunctivitis or ear infection. Twice to the walk-in clinic for similar ailments. One trip to the emergency department for fever. Oh, and one other trip to the emergency department. This time in an ambulance from the ski hill. Dylan had been snowboarding but his injury wasn't due to the sport. He had caught his finger in the outer bathroom door and had cut off the tip of his finger. I remember the doctor telling us that Dylan may never be able to be a surgeon as he may have severed the nerves in his finger. I also remember being sad that Dylan might be limited in what he could do when he grew up. How could we know then that he would never graduate kindergarten, never mind go on to post-secondary education?
We basically ruled out Kawasaki disease in those months. There didn't appear to be any conclusive evidence that Dylan had contracted Kawasaki disease. The only symptom that he had once that made it a possibility was peeling skin on the tip of his fingers. "Dylan, what happened to your fingers? Were you picking at them? Did you soak in the bath too long?" He was not sick and had no other symptoms at the time so we never gave it a passing thought.
After months of calling and crying and complaining to the Regional Coroner's office, the coroner's report was finally ready. "Was there anything conclusive in the autopsy?", I asked the coroner. "Well, yes", he said, "your son died of Kawasaki disease". Just like that. We now had a confirmed diagnosis.
Unbeknownst to me at the time, the organization that would become Kawasaki Disease Canada was already starting to form in my mind. After Dylan died, we were overwhelmed by the love and support of family, friends, acquaintances, and even total strangers. We knew we wanted to give back to the community that supported us. We also didn't want anyone else to have to experience what we did.
Since our first unofficial Board Meeting on February 14, 2014, we have accomplished so much and I could not be more proud of the co-founders and volunteers who have made this possible. But, much more is needed to continue to save hearts and even lives.
Thank you for accompanying us on this journey.
- Elizabeth Heald
Dylan Warren Galilee
January 6, 2002 - May 15, 2008
Remembered with Love, Joy, and Laughter
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Please Donate
Our mission is to
support individuals and families
affected by Kawasaki disease,
educate the health care community and the public
, and
support Kawasaki disease research
.
Please help fund our programs by donating to Kawasaki Disease Canada.
You can do this online by visiting our website and clicking the Donate button, clicking here or by mailing a cheque to our address at the bottom of this newsletter. As we are a national registered charity, tax receipts will be provided. See more about the work you will be helping to support in the committee updates below.
As an added BONUS, we are excited to tell you about The Great Canadian Giving Challenge! Every dollar you donate to our charity in June qualifies us to win $10,000! Get all the details at www.givingchallenge.ca!
Thank you for your generosity!
Together, we can save a child's heart.
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Awareness & Education
The Awareness & Education committee was recently revamped to combine our Marketing committee with our Outreach & Education committee. This new committee is focused on everything to do with early detection of the disease, including educating health care professionals, creating awareness pieces and strategies, speaking to parent groups, and much more.
We have created posters, symptom cards and t-shirts as well as film projects awaiting funding.
The 10 committee volunteers are an amazing group of individuals from Calgary, Alberta to Charlottetown, PEI and everywhere in between.
One area this committee is focusing on is ensuring our social media communication strategy is meeting your needs. Please take a few moments to complete this brief survey:
https://www.surveymonkey.com/r/WYH3CT5
Thank you!
~ Carrie Lovegrove & Meghann Trott
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Research
In March, we were excited to present our
Inaugural Student Research Award! The winner was Ma
thew Mathew. Matt's research involves working to construct computer models of the blood vessels of Kawasaki disease patients who have large aneurysms and use computers to investigate how blood flows through the models. It is expected that this will help determine how the location and shape of the aneurysm affects the chance of forming blood clots. Click
here
to learn more!
- Susan Heald
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Support
We held our first Kawasaki Disease Parent & Caregiver Gathering in Toronto last month. It was a great opportunity for parents to meet and share their experiences with us and with each other. We will continue to host similar forums in other parts of the country as opportunities arise and funds are available.
Families frequently reach out to us with questions about Kawasaki disease, what type of treatment they should expect, follow-up protocols, and long-term consequences. We have collaborated with Kawasaki disease experts and are pleased to provide responses to these FAQs on our website. Click
here to review.
If you are a parent or a caregiver who has been touched by Kawasaki disease and would like to be matched with one of our support volunteers,
please click here.
- Carin Lin
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Thank You to our Sponsors
We are very grateful to our sponsors for their generous support.
We would also like to acknowledge the Kawasaki Disease Foundation in the United States for their mentoring and advice, and for allowing us to use their poster design and images.
Marketing & Communications Sponsor
Legal Services donated by Gowling Lafleur Henderson LLP
Logo Design donated by Alfredo Galvan
Website Development donated by Bill Stone
Iconic Group provided a discount on their website development services
Poster & Symptom Card printing donated by Robert & Matt Moore at
The Print Shop
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