10/29/2026
When I think back to that ambulance ride nearly 18 years ago, I think about how little I knew about the world we were about to enter. I didn’t even know what a haemoglobin was. I was simply a mother trying to understand what was happening to her baby and how I could help him.
Little did I know that this journey would change the entire course of my life.
Over my son’s lifetime I’ve learned the language of blood counts, transfusions, bone marrow failure, and genetics. I learned to ask questions, challenge what I didn’t understand or agree with, advocate for my son, and find my voice in a world I had never imagined being part of.
Somewhere along the way, advocating for Jack became something bigger than our family. For nearly 18 years, I have also been leading DBA Canada’s work, helping support families, connect our community, raise awareness, and push for progress toward better treatments and, ultimately, a cure.
I never planned for this to become such a significant part of my life. I never wanted to become an expert in a rare blood disorder. I simply wanted my son to be okay.
But this journey has taught me that sometimes, the hardest experiences in life lead us to work we never knew we were meant to do.
I have grown older and wiser. Jack has grown from a baby in my arms into a young man ready to take on the world. And together, we have learned more than I ever could have imagined on that first day.
We are walking out of SickKids with a lifetime of memories, a deep appreciation for the people who have cared for us, and hope that the work we continue to do will help make this journey easier for the families who come after us.
SickKids Foundation The Hospital for Sick Children
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