As I reflect on life with Duchenne MD, I feel vindicated

Two weeks ago, I stood on stage at the Fullerton Hotel Singapore to receive a Study U.K. Alumni Award for “exceptional efforts in driving inclusion and positive change in society.” The British high commissioner to Singapore handed me the award while my partner, Amanda, and my caregiver, Glenda, cheered me on.

It was a bittersweet moment, as my grandmother had passed away just six days earlier. But in that moment, I felt something that had eluded me for years: vindication — not only because I was being recognized for persevering against ableism and systemic barriers here in Singapore, but also because, every day, I live with Duchenne muscular dystrophy.

This award wasn’t just about my advocacy work; it’s also a tribute to my late brother, Isaac, who passed away in 2019 from Duchenne-related heart failure at the age of 28. It was the lowest point in my life, and it shattered my world.

Recommended Reading

February 27, 2025 News by Steve Bryson, PhD

Early preventive heart treatment extends survival in DMD: Study

At the time, I was midway through studying for a criminology degree at the University of Liverpool in Singapore, but was having difficulties due to an unsuccessful steroid taper in early 2017, which triggered severe withdrawal symptoms. The final year of undergraduate studies here is the most important, accounting for most of a student’s overall grade. When Isaac died, I’d completed only about a quarter of my final year’s work.

Isaac’s death forced me into a downward spiral. Even though his cardiologist had warned our family that his heart condition was irreversible, we’d clung to our hope for a miracle.

Climbing out of the abyss

I wanted to channel my grief into something meaningful, so I poured everything I had into my undergraduate thesis. But I was unraveling. My parents, who also were deeply in mourning, pushed me hard to focus, afraid that I might not graduate. Anxiety overtook us all.

When the COVID-19 pandemic struck, social isolation compounded my distress. I desperately needed my peers and others in my support system, but I was stuck at home, drowning in grief. That isolation and stress culminated in a devastating mistake: I unintentionally plagiarized part of my thesis.

I knew that my academic dreams were over when I received an email advising me of the mistake I’d made and that I had failed the paper. While I still had enough credits to graduate, my degree had the lowest possible classification. In such a competitive job market, it felt like I’d just blocked myself from any meaningful professional future.

For three months, I sank into a deep depression. When I finally emerged, I struggled to rebuild my life. My first job fell apart within three months. Then, in 2022, I got dengue and nearly died.

Somehow, I survived that ordeal, and in the years since then, I’ve managed to find my way back to life.

My first meaningful work experience was at K9Assistance, a nonprofit that promotes the use of assistance dogs in Singapore. It renewed my sense of purpose. I also pursued my dreams in theater and met my girlfriend, Amanda, which provided me with unexpected love that strengthened me. I took on a new role at another employer, co-founded the visual arts collective Rebirth Ensemble, and won a 2022 dean’s award from the University of Liverpool, a 2023 Goh Chok Tong Enable Award, and now, a 2025 Study U.K. Alumni Award for social action.

While standing on that stage at the Fullerton Hotel Singapore, I thought back to 2021, when I’d received the plagiarism notice, which prompted the crushing realization that I’d never achieve the first-class honors I’d worked so hard for. Yet, there I was, being recognized for the work I’ve done since then.

My journey with Duchenne has taken me from fundraising for muscular dystrophy as a child to the depths of despair and back again. After all of it, I’ve learned this: Failure isn’t the end; it’s a turning point.

As I looked at Amanda and Glenda from the stage, I felt triumphant. Duchenne has shaped my life in ways I never could’ve foreseen, and it has given me a story worth telling. And for that, I remain grateful. Thank you, Duchenne, my lifelong partner in crime.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.