Jahan
(Age 14)
Ontario
| June 4, 2013 is a day I will never forget. We received the earth-shattering news that our firstborn son, Jahan, had Duchenne muscular dystrophy.
Even before the diagnosis, there was that quiet whisper of mother’s intuition. Jahan was a smiling, playful little monkey — gentle, sweet, and always observant. But at 15 months, when he was still cruising and not quite walking independently, I felt something wasn’t sitting right. I brought it up. I was reassured. “All toddlers develop differently.” Follow your intuition. Always. We sat in a small room in the Genetics Lab at The Hospital for Sick Children. The doctor spoke softly: “Your son has Duchenne muscular dystrophy.” Everything inside me shattered — but I refused to cry in front of him. He could not see me break. |
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Duchenne is not just muscle weakness. It is progressive loss. It is adaptation after adaptation. It is watching milestones shift. It is strength you didn’t know you had — because you don’t have a choice.
That first year was grief. It felt like I was grieving a future that suddenly looked different. I searched endlessly for answers — clinical trials, stem cells, anything that might slow the progression. I joined parent groups filled with love… and fear. We clung to hope that research would move fast enough for Jahan.
Then something changed. My brother-in-law pushed me out of my comfort zone and into a walk for muscular dystrophy. I didn’t want to go. I was overwhelmed. But that day shifted everything. For the first time, I didn’t feel alone.
We created TEAM J RUN — not just to fundraise, but to fight back. To turn heartbreak into action. To build community. To show Jahan that we do not sit quietly in hard things.
We were offered counselling, alone, as a family, or as a couple, all of which we declined. We needed to deal with this ourselves at that time. We left with a couple of leaflets to read up on Duchenne that she had given us.
I could not comprehend what I had heard and I was in denial and shock and couldn’t even believe any of it was true.
By 2015, we were the second highest fundraising team in Canada, raising over $15,000. Year after year, our army grew — friends, family, strangers who became family. People who ran marathons, hosted events, sold baked goods, sponsored shirts, delivered flyers, showed up to walk beside us, and held us up when the weight felt unbearable.
| Today, 13 years into this journey, as Jahan is now 14 years old, our fight looks different than it did in the beginning. Duchenne has progressed. The adaptations are bigger. The equipment is heavier. The planning is more complex. But so is our advocacy. So is our voice.
We now proudly support both Defeat Duchenne Canada and Muscular Dystrophy Canada — not just as participants, but as advocates determined to see change in our lifetime. To date, TEAM J RUN has raised over $200,000 for Duchenne research and support. |
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Two hundred thousand dollars. Two hundred thousand reasons to believe in community. Two hundred thousand reminders that we are not fighting alone.
But beyond the numbers, what humbles me most is the love. The meals dropped at our door. The babysitting. The rides. The messages. The people who simply sit with us when days feel heavy. The ones who walk beside Jahan, not in pity — but in power.
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Jahan continues to teach us courage in ways words cannot explain. His resilience, his quiet strength, his humour, his ability to adapt — he is still that sweet, smiling boy. Only now, he carries a warrior’s heart.
Some days are heavier than others. Some seasons stretch us more than we expect. But we move forward. Together. |
To every single person who has supported us — you are part of this story. You are part of Jahan’s fight. You are part of the hope.
And together, we will defeat Duchenne.