Finding strength and stability in light of a dark diagnosis

Ibrahim's story was included in Canada’s Rare Voices 2023.

_“My son Ibrahim always had some balance issues. He’s a hyperactive kid, easily distracted, so when he would trip and fall, we'd just brush it off as his mind not paying attention to what his feet were doing.

It wasn’t until he started school that it really became clear how far outside of the curve his motor control had slipped. Ibrahim’s kindergarten teacher brought it up to me, saying, ‘You know, I think something’s not quite right. Ibrahim is falling quite often, and it’s not that he’s not paying attention, he just seems to suddenly lose his balance.’

At first, I took him to a podiatrist for orthotics, because he’s a bit flat-footed, but it quickly became obvious that whatever it was went well beyond that. We were referred to a pediatrician who suspected something neuromuscular. Blood work was ordered and, a week later, we got the call. The pediatrician’s suspicions were correct. It was Duchenne muscular dystrophy.

I had no idea what Duchenne was or what to expect, and the first thing the doctor told me was not to Google it. So, of course, that was the first thing I did. And the more I learned about Duchenne, the more hope I lost. Ibrahim was five when he was diagnosed, and I was reading about boys who were passing away from the disease at 17. It’s a very, very hard diagnosis to receive.

The future was suddenly dark. I’m a financial planner by profession, so thinking about the future is my main mode of operation, but it just became too bleak. How can putting money in an RESP be a priority when you don’t even know if your son is going to make it to 20? This is a cruel disease that takes your hope and gives nothing back.

“And the more I learned about Duchenne, the more hope I lost… I was reading about boys who were passing away from the disease at 17.”

But Ibrahim, through it all, was so logical and practical about Duchenne. He had all these questions about why he needed to take his medication, about what was going on with his muscles, about why he needed to wear braces at night when none of his friends did. The questions broke my heart, but once he had the answers, he was always just like, ‘Okay. I can do this.’”

Ibrahim: “I’m going to be 11 years old next month. I like drawing, I like cars, and I like playing with my friends. It’s hard having Duchenne because it affects my ability to play almost anything physical. If I didn’t have Duchenne, I would be playing soccer, baseball, basketball, and cricket. My uncles play cricket and I would like to, too. 

The main thing I want people to know is that it isn’t muscles that make you strong. My muscles are getting weaker every second, but I have mental power. And I know how to have fun. It just makes me sad that I have to depend on other people more than I want to, especially with my wheelchair. My big hope for the future is that someone will make better wheelchairs. I’m hoping to be an engineer when I grow up. Or, if they find a cure for Duchenne, a professional cricket player.”

Sumaiya: “After seeing how strongly Ibrahim has handled this, I realized that I needed to start taking care of myself again, too. So I began reaching out for support. I started on anxiety medication, though I had never had anxiety before Ibrahim’s diagnosis. And we moved in with my parents, which was an incredible decision, as they’ve been so supportive and such amazing grandparents to Ibrahim. My mom is on top of everything. She knows every one of Ibrahim’s appointments at SickKids and Holland Bloorview, and she knows all of his medications and everything he can and can’t eat. My dad is the fun grandpa, picking him up from school, taking him places, and clicking on his YouTube videos a hundred times to drive up the view counts.

Moving in with my parents has allowed us to regain a sense of stability and presence that we cherish, even as Ibrahim’s condition continues to progress. Today, the future looks a little less daunting. I’m able to take in and appreciate all the research that’s happening on Duchenne, all the advancements that have already been made, and how much more hope there is now than there was just a few years ago. That was invisible to me when times were darker. I’m putting money in an RESP again.”

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This initiative was supported by Pfizer Canada ULC. This page and the editorial themes covered were developed by Patient Voice.