Zachary’s Story

This is Kawasaki disease in Canada.

19/01/2019

This is Zachary’s Kawasaki disease story, as told by his mother, Samantha.

Zachary was a very active vibrant 4-year-old — full of energy and a nonstop child.

In November 2013, he got sick, developed a high fever very suddenly. Nothing seemed to take it down or keep it down. I took him to his doctor on day 2, they said, “Oh most likely a virus” and to just keep an eye on it. On day 5 it was not getting any better and he was becoming more and more lethargic. I returned to the doctor again to be told that it was “maybe strep” and to give it another 48 hours. On day seven I returned again.  At this point I was not leaving without more answers. They said it was most likely scarlet fever or strep throat as he has a strawberry red tongue and it hurt him to walk and his hands had begun to peel and his eyes were red. They did a swab to test for strep throat and gave me an antibiotic to start him on. I immediately started him on the antibiotics and continued Tylenol and Advil, trying to control his fever. There was no controlling it. On the night of day 8, I was at a complete loss of what was wrong with my son. I started Googling his symptoms again. Kawasaki disease kept coming up but I thought there’s no way this is it — the odds are so low for a child to get this. I posted a picture on my Facebook page of Zachary’s hands and all the skin he had lost; he was bleeding from it. My normally nonstop little boy had become lethargic, unable to walk, unable to eat. A childhood friend of mine private messaged me, not aware that I had these suspicions about Kawasaki disease, told me that she strongly believed that Zach could possibly have Kawasaki disease. She told me her story about how her daughter had it at the exact same age, a month before she turned five, and all the symptoms were exactly as I was describing of Zach. First thing in the morning I got him dressed and carried him down to the car and brought him to our children’s hospital. After the doctor had a look at him, she excused herself to go get the head paediatrician and they explained to me that they believed that he had Kawasaki disease and they would need to begin treatment right away and admit him and do an echo of his heart. It was day 9 they told me there was a 10 day window and they weren’t sure how bad it could be and to prepare myself for the worst. It was like living a nightmare. How could something so rare happen to my son? How did he get so sick? Nothing made sense. They admitted him and did an echo and started the IVIG. Thankfully the echo came back clear and we were so lucky. The next morning I could see my little boy slowly regain his smile and his ability to walk. The road to recovery has had many bumps along the way.

It has been 5 years since he went through this and there’s not a day that goes by I don’t think about it. He is now a healthy 10 year old who joined a cheerleading team last year and has a great love for life. Going through this has taught me that mom instinct and trusting your gut was a very real thing. I just knew something more was wrong with him and I didn’t care how many trips I had to make to get answers.

At now 10 years old, Zach takes the opportunity to share his story as much as he can. For the past 2 years, on Kawasaki Disease Awareness Day, he does a presentation for his class and a couple other classes of previous teacher he’s had. He wants to make sure he shares his story and hopefully helps somebody else. He wants to become a doctor one day and help save kids from ever living what he has lived. I take great pride in helping spread the message and help educate as many people as I can on this rare disease. The more we know, the more we can help!

As a side note, about 7 months after Kawasaki disease, he had to have his tonsils and adenoids removed. Twenty-four hours after the surgery he lost an extensive amount of blood and was rushed to the hospital almost lifeless, he made a full recovery thankfully. He has continued to battle so many hurdles in his short life. Zach recently lost his dad to cancer this past May. He is the strongest boy and brave beyond words. He is a big brother to three and I am a single mom to the four of them now. With kids aged 6 months, 21 months and 5 years old. He has lived through so much and yet still stands tall and wants to try and help everyone and spread awareness in all ways he can. He is such an inspiration to so many. He often asks to get shirts made and posters printed or pamphlets that he could distribute during his presentations to help send the message home to parents as well. I wish I had the funds to make all that happen for him. He also wants to work with the Kawasaki disease organizations to help in any way he can — even if it’s just by spreading his story to save a life.

This is Zach’s message:

“Hi I’m Zach and I’m 10 and I survived Kawasaki disease at age 4. I hope to help spread awareness and share my story to as many as I can forever. I am a fighter and always will be “

Thank you for taking the time to read our story today.

 

 

**Opinions expressed are those of the parent who submitted this story.