Summer 2017 Newsletter
sunny-tree-boughs.jpg
Kawasaki Disease doesn't take a holiday

Have you ever thought about how many songs have been written about summer?  We couldn't find a definitive number but would guess it's in the thousands.  And the common theme is "holidays"!  As Canadians, we all look forward to those few months we call summer to kick back and relax with family and friends.
 
Although Kawasaki disease (KD) is more prevalent in the winter and early spring months, it never takes a holiday.  As you will read in "Spotlight on Our Volunteers", KD's desire to damage a young person's heart and vascular system can strike at any time.  Parents and healthcare professionals must be vigilant all year.
 
In concert with vigilance on the front lines, research into new diagnostic procedures, treatment and medications, along with further study of the causes of KD continues year-round in Canada and elsewhere. KD research takes no holidays either.
 
Thank you for continuing to support Kawasaki Disease Canada in whichever way you are able...by reading our newsletter, donating to help us fulfill our mission, or volunteering on a committee.
 
Wishing you a wonderful summer!

group_buds_toast.jpg
"Changing Leaves, Changing Lives" Fundraising event - Tickets on Sale Now!

Our Inaugural Waterloo Region fundraising event, Changing Leaves, Changing Lives, will be held on the Autumnal Equinox, Friday September 22, 2017, 5:00-10:00 p.m.  
 
This open air dinner event will be held under a marquee tent with an outdoor patio overlooking the lawns and clock tower of beautiful Victoria Park in Kitchener, Ontario. This is planned as an interactive event, with seating as well as high-top tables for those guests who wish to mingle while enjoying the entertainment.
 
Tickets are $100.00 and include dinner and dessert provided by three gourmet food trucks, beer and wine, and non-alcoholic beverages. Spirits will be available for purchase.
 
Email us at info@kdcanada.org to purchase tickets or to sponsor the event. Or click here to purchase tickets online via Eventbrite.
 
Thank you to our first two generous sponsors, Grant Thornton and Carlsberg Canada!

Donor Feedback


We  rece iv ed this lovely note from one of  our donors in Toronto!  
Thank you so much!
 
"The comeback is always stronger than the setback."
 
From the time Jaxson was an infant, he's had his fair share of setb acks. Kawasaki disease however, was by far his biggest challenge.  After numerous pokes, pricks, ECGs, 'arm hugs', IVIG treatments and appointments at Sick Kids over the course of two years, Jaxson was resilient and "came back" stronger than ever.
 
Today, Jaxson is a strong-willed, brave, inquisitive, and caring young person. So caring in fact that when given a choice as to which organization he wanted to donate to for his First Holy Communion this past spring, he simp ly said, "Kawasaki Disease Canada", without any hesitation.
 
Thank you Kawasaki Disease Canada, for the education and support you  generously give to families like us, so that we can help our children continue to have strong and healthy hearts.

 
Spotlight on Our Volunteers

Antara Ramkissoon began volunteering for Kawasaki Disease Canada in December 2016.  She joined the Awareness & Education Committee six months after her (now) four year old son, Aayan was diagnosed and treated for Kawasaki disease in June 2016. 

Here is his story:

When Aayan woke up with a stiff and sore neck, we thought it was very strange but chalked it up to him playing rough as he usually does being a 3 year old boy. Later that evening, however, it was more than a sore neck, we noticed swollen areas on both sides accompanied by a fever. We administered Tylenol and tried to make him comfortable that night. He didn't eat or drink anything and it was very unlike him to be so lethargic. That night was rough, none of us got any sleep and his fever was running high. The following morning we took him straight to his Family Doctor. After taking a look at him, he was prescribed antibiotics for what appeared to be strep throat. After returning home and giving him his suggested dose of antibiotics, we waited. It was unusual, because we noticed his palms and soles of his feet looked red and swollen for a few hours. We thought it was likely as a result of his fever which still remained high. That entire day he did not eat or drink anything and he never used the bathroom. Later that night he broke out in an awful rash all over his arms and thighs. His eyes looked bloodshot and we knew our son was suffering. The inside of his mouth and tongue looked raw and his lips were cracked. We rushed him to the ER. When he was finally seen by the ER doctor, we were told that Aayan might have had a reaction to his antibiotics and we were given a new prescription. We were also told to give him an Aveeno Oatmeal bath for his rash. Feeling unsatisfied with the medical advice, we reluctantly came back home. We gave him all colours of Gatorade, offered various ice cream sundaes and any imaginable dessert in hopes to get something in his system. He remained lethargic and ate nothing. The following day, (day 4), his fever remained high, he was dehydrated, we tried to give him a bath. He screamed in pain and discomfort and had a nose bleed. He became very ill and nearly collapsed on the floor when we called 911.  The ambulance came and we rushed back to the ER. They quickly gave him IV fluids and ran blood work.  We stopped the antibiotics as it was unclear what was happening in his tiny body. After being admitted and quarantined in the hospital the ER Pediatrician this time took matters in his own hands. After 24 hours in the hospital and being misdiagnosed twice, finally on day 5 it was determined that Aayan had Kawasaki Disease. He displayed textbook symptoms: fever for 5 days, bloodshot eyes, swollen lymph nodes, strawberry tongue, cracked lips and red/swollen palms and feet. The skin under his feet started peeling. He was rushed for an echocardiogram which thankfully showed no damage to his heart and his IVIG treatment was started. By day 6, on the evening of June 3, 2016, Aayan started to show signs of improvement after receiving the full round of IVIG treatment. The fever finally subsided and he finally had urine and bowel movements after having food by mouth the next day. We kept him cool and gave him tons of ice and freezies to help him as that is all he wanted and could keep down. After one more successful echocardiogram the following day, we were being discharged from the hospital. Aayan remained on Prevacid and Aspirin therapy for approximately 8-10 weeks after IVIG. We noticed the skin on his hands and feet peeled during this time. Thankfully, all post-treatment echocardiograms showed no damage to his heart and Aayan recovered fully from this acute disease.  
 
Today, Aayan is followed by his Pediatrician and Cardiologist with annual heart follow ups. We truly feel blessed that Aayan was diagnosed and treated for KD within the critical 10 day period and we do everything we can to spread awareness of this disease.
 
 


Antara was born in East Africa, and as a child moved to Canada with her family.  She completed her Degree in Business Administration from Wilfrid Laurier University, graduating with honours in 2005.  
 
She began her very rewarding career with Scotiabank around the same time and over the years held numerous roles.  She gained an interest in Project Management, and obtained certificates in Project Management from the University of Toronto in 2014.  Antara is currently a Senior Manager, Program & Business Development with Scotia Wealth Management at the Scotiabank Head Office in Toronto.
 
Antara has been married to Rajin for seven years.  In her spare time, Antara loves to travel, cook, and garden.  She has recently also adopted a holistic approach to life which combines mindfulness and ancient Yogic practices, and completed the Inner Engineering program through the Isha Foundation in March 2017.
 
With a renewed sense of passion and involvement with Kawasaki Disease Canada, Antara is excited and committed to the work being done in this not-for-profit organization.  Recently, Antara took on the role of Co-Chair of the Awareness & Education Committee and continues to network with Schools and Doctors in the GTA West community to raise the level of awareness and education of Kawasaki Disease.
 

Committee Update: Awareness & Education

The Awareness & Education Committee is busy evaluating a number of its previous education sessions. We have made presentations to pediatric grand rounds, to a group of physicians and surgeons, and to pharmacy and medical students. We have learned a lot and received excellent feedback from participants. This summer, we have engaged with several Hospital Educators and are currently making updates to our education programs, including bringing in new information contained in the recently revised Kawasaki Disease Guidelines. Our first round of education using the newly modified presentation will start with a pilot session at the emergency room nurses staff meeting October 6, 2017 at Guelph General Hospital in Guelph, Ontario.
 
~ Elizabeth Heald & Antara Ramkissoon


Kawasaki Disease Canada 

Charitable Registration #: 81190 4572 RR0001
Canada Revenue Agency: www.cra-arc.gc.ca/charities