How ‘The Remarkable Life of Ibelin’ moved me as a DMD survivor

A few days ago, I watched the Netflix documentary “The Remarkable Life of Ibelin.” I wasn’t prepared for how deeply it would move me.

The film follows Mats Steen, a young man from Norway who lived with Duchenne muscular dystrophy (DMD). Online, he was known by the avatar Ibelin, a hero in the game World of Warcraft. Offline, he was Mats, navigating the challenges of life with DMD from his wheelchair. When Mats passed away in 2014 at the age of 25, his parents discovered he had many online friends across the globe who mourned his loss. His life had touched far more people than they could’ve ever imagined.

As I watched the documentary, I couldn’t help but see pieces of my own life reflected in Mats’ story. Living with DMD myself, I know how it feels to be physically limited while longing to leave a lasting impact on the world. His journey resonated with me on a deeply personal level, reminding me of my own experiences and aspirations.

Mats’ story also brought back memories of my late brother, Isaac, who also had DMD. Isaac passed away in 2019 at the age of 28, but his impact on the DMD community here in Singapore lives on. Like Mats, my brother made a difference in quiet yet powerful ways, and both their stories remind me that our actions can have ripple effects beyond what we see.

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Duchenne lives matter

I’ve often wondered how society perceives those of us with Duchenne. Too often, we’re viewed through the lens of our disability rather than as individuals with unique stories and capabilities. Our capabilities can quickly feel overlooked when society places a higher value on productivity and perfection.

But “The Remarkable Life of Ibelin” reminded me that our voices matter. Mats may have rarely left his room, but through his online persona, he built friendships and inspired others. His disability didn’t define him; his kindness, humor, and leadership did.

I’m not a gamer, but I understand the sentiment. Sometimes our most meaningful connections are formed online through shared stories and experiences. Writing this column has allowed me to be heard and seen in ways I never expected. Like Mats, I hope my words remind others that we all have a place in this world, regardless of our abilities.

Mats’ story also made me reflect on Isaac’s legacy. Together, he and I raised over $100,000 for the Muscular Dystrophy Association (Singapore) to fund a wheelchair-accessible vehicle service that continues to help families today. Isaac’s influence remains with me, even though he’s no longer here.

Mats’ story shows that our impact doesn’t end with us. As DMD survivors, we may not always see the ripple effects of our actions, but that doesn’t mean they aren’t there.

When the credits of the documentary rolled, I found myself both emotional and inspired. Mats’ journey reminded me of something simple yet profound: We all matter. Our stories matter. Our voices matter.

People with Duchenne should never be forgotten. We deserve to be seen for who we are: storytellers, dreamers, and difference-makers. And we’re just getting started.

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.