Deana & Liam | Milton, ON
“Liam was born on Valentine's Day in 2015. His diagnosis came three weeks later. We honestly knew nothing about cystic fibrosis. So I did exactly what I knew I shouldn’t — I looked it up online.
I was met with stories of kids needing lung transplants before the age of five. Kids passing away at the age of seven. It was every parent’s worst nightmare. To discover that there was something seriously wrong with our seemingly perfectly healthy child. I had visions of us constantly in the hospital, never knowing from one day to the next if he was going to survive. Powerless.
“It was every parent’s worst nightmare.”
But then the doctors at McMaster helped us understand that there were so many ways to change the odds and make a difference. Medication, physiotherapy. And advocacy. My father especially was a huge advocate for Liam. He was always making sure everyone knew Liam’s condition. Always reminding us not to take anything in life for granted. My dad was the one who whipped my butt to get me involved in the community as well. ‘You need to be his voice,’ he told me.
Quite early on, though, we learned that Liam could also be his own voice. He’s never been afraid to make himself heard. When he started kindergarten, it was his idea to create a children’s book to help his friends understand his disease. Liam, Strong as a Tree. In his own words, the book explains why he couldn’t run as fast as his friends, why he had to go down to the office for oxygen, why he needed extra help. Most importantly, it explained that he was really no different from any other kid.
Though the book started off as a tool for Liam’s classmates, we knew quickly that it could make a much broader difference. With the help of Iguana Books, we sold over 1,500 copies in the first year. Liam was so happy. He’s written a second book now, this one about a hospital stay, and also about how he has processed my dad’s death from stage four lung cancer.
Since my father passed, we’ve all known that we have very big boots to fill. We’ve been going non-stop with events and fundraising and awareness ever since. I have no doubt that those boots will fit Liam, though. The kid never stops.”