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The Remarkable Life of Ibelin

25 October 2024

Today (25 October) The Remarkable Life of Ibelin launches on Netflix and across cinemas. We were delighted to be invited to the premiere of the film last month, that explores the life of Norwegian gamer Mats Steen, who died aged 25. 

We reveal why it may make an interesting but perhaps a difficult watch for the muscle wasting and weakening community, as it shines a spotlight on the importance of gaming.  

The story behind the story  

Mats’ parents mourned what they thought was an isolated life, as he lived with Duchenne muscular dystrophy. Following his death, they gained access to his blog discovering deep friendships he created virtually over years of gaming. 

Unaware he had long been leading a vibrant digital life that had left a profound impact on a community of fellow gamers, the film takes us on a journey through Mats’ adventurous online life, introducing Ibelin, his charismatic World of Warcraft persona. 

Through reconstructed animated moments from Mats’ gameplay, narrated entries from his blog, user generated content from the family’s archives, along with interviews with people who knew him as Ibelin, a picture of a remarkable young man emerges, one that shows how community and soulful relationships can transcend the boundaries of the physical world. 

Understanding the story  

The film was expected to take a year to produce but ended up taking four. Directed by Benjamin Ree it’s not your typical or traditional documentary and the unique piece captures the audience throughout.  

Highlighting an imaginative world where Mats could be free and live out fantasies such as walking and running that wasn’t possible in his day-to-day life due to his condition, which led him to being a full-time wheelchair user.  

The film focuses on the deterioration of his condition, with his later life showing him having personal assistance, relying on a wheelchair and using respiratory equipment.  

Gaming bringing people together  

It showed Ibelin to be compelling and compassionate and a supporter for others. He supported a mother and her child who was diagnosed with autism, who didn’t like being touched in the real world, yet he was able to virtually hug him. Yet Mats did not share his own day-to-day struggles.  

He almost became an ‘agony uncle’ for so many in the gaming community. Yet, he shied away from his own disability, as he always kept his camera off to hide his condition. It was only a few years later that he disclosed his condition to a friend that he became comfortable with and shared his true identity.  

It highlights the importance of the gaming world for people like Mats and the need to feel part of something and be seen in a non-judgmental way.  

Life outside of the game 

Forging friendship was evident as hundreds attended his funeral including a girl who he had been having conversations with for many years forming a romantic connection, as she became a pallbearer in what was described as a ‘beautiful, powerful and moving’.  

The film was impactful, emphatic and compelling with a dusting of humour throughout. Following the screening there was a Q&A session with the Director, Producers and Mats’ parents, where it was revealed that all the actors used for the film had a form of disability.  

The launch date coincides with the 10th anniversary of Mats’ death. It was revealed that every year following his death it’s been marked in the game.  

Watch the trailer of ‘The Remarkable Life of Ibelin’

If you have been affected by the film, speak to us

Our helpline is open Monday-Thursday 10am-2pm.

Get involved in Game On

Like a board game night?  Or perhaps you love streaming on twitch? From Monopoly to Mario Kart, join the fun and get your Game On for muscle wasting conditions.

"Gaming allows me to do things I can’t in real life, like exploring or going up mountains”

Vivek, aged 32, has Duchenne muscular dystrophy. An avid gamer, he cares about making gaming accessible to all. He talks about his experience working as a gaming accessibility consultant and what accessibility means to him

“Gaming is my freedom and escape”

As an avid gamer, Danielle shares how gaming opens a world of possibilities for her, about the adaptive controllers she’s found that make her hobby easier, and why Game On is a such a great way to raise money for Muscular Dystrophy UK.

“I’d been looking for a fundraiser for my son… When I heard about Game On it was perfect!”

Danielle’s two sons participated in our Game On fundraiser, playing 12 straight hours on their Xbox. She tells us about their epic challenge and why it’s important  her oldest son Ryan, who lives with Becker muscular dystrophy, has ways that he can get involved in fundraising.

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