Adam
Ontario
My name is Saja Alwani, and I’m here to tell you about someone incredibly special to me, my little cousin, Adam Dib.
In 2019, my family’s life changed forever. Adam was just five years old when he was diagnosed with Duchenne muscular dystrophy, a rare and progressive genetic disorder that weakens the muscles over time. At first, we didn’t understand the full weight of what this diagnosis meant. We knew something was different.
As a baby, Adam broke his leg, and it took way longer than it should have to heal. We thought his delays were all tied to that injury. But as time went on, the signs added up, the falling, the fatigue, the struggles with movement. When we finally got the diagnosis, it felt like the ground had been pulled out from under us.
Watching Adam get weaker as the years go by has been heartbreaking. It’s incredibly painful to see your baby cousin face a battle that none of us can fight for him, a battle we can’t fix or make go away.
|
It’s hard to describe the pain of watching someone you love lose pieces of their strength day by day. Over the past few years, we’ve seen Adam’s calves grow larger, a symptom of Duchenne, and we’ve watched as he’s fallen more often and started needing help just to get back up. And through it all, we’ve also watched him grow more frustrated, and more aware of the things he’s being forced to give up. For a long time, my cousins and I didn’t fully grasp what Adam was going through. We were kids, too. But as we’ve gotten older, we’ve come to understand just how much has been taken from him, not just his strength, but pieces of his childhood. It’s difficult to witness, and harder to accept what Adam is going through, especially knowing that there’s no cure. And yet, even with all of that, Adam still shines. |
 |
He has the kind of contagious laughter that fills a room and makes you forget, just for a moment, that anything is wrong. He has a light inside him that Duchenne can’t dim.
| He’s passionate, he’s brave, and he’s obsessed with Cristiano Ronaldo and dreams of being a soccer star just like him. And even though that dream may look different now, he hasn’t stopped dreaming.
And I want to fight for that dream, and for Adam. And that hope and fight for his dreams has inspired me to do something. This year, I organized a fundraiser at my school, St. Thomas Aquinas Catholic Secondary School, called Capture the Flames. It was a capture the flag tournament, and it was more than just a game. It was a way for us to come together, to support a cause bigger than ourselves, and to stand with kids like Adam and Jesse. I’m so proud to say that we raised $950. And even more than the money, we raised awareness. We shared Adam and Jesses story. We lit a spark. |
 |
Because Duchenne might be powerful, but so is love. So is community. So is hope.
What makes this even more personal is that my family has been walking this path for longer than we even realized. Long before Adam’s diagnosis, my mom and her siblings went to Saunders Secondary School with Jesse Davidson, a local boy who also had Duchenne. They walked for Jesse, they raised funds, they knew the courage it took. And years later, when my mom was in university, she worked closely with a professor studying Duchenne muscular dystrophy. She studied it, she supported the research, and still, she never imagined her own her nephew, would one day be affected by it.
It feels like this cause has followed our family for years, and now, it’s become our story, too.
But stories like Adam’s, and Jesse’s, are full of hope. Because while Duchenne takes, it also brings people together. Communities, families, schools, strangers, all working toward one goal: a cure.
Adam has taught me more about strength than any class or book or teacher ever could. And I will keep speaking, keep organizing, and keep showing up, because he deserves that. And because, even though Duchenne may steal a part of a childhood, it cannot take away dreams.
And that is why I’m here. For Adam. For Jesse. For every child with Duchenne who still dares to dream big.