Director Benjamin Ree. Photograph credit: Kristoffer Kumar.MUSCULAR Dystrophy UK talks exclusively with Director Benjamin Ree on the ‘remarkable’ things that have happened six months since the award-winning film ‘The Remarkable Life of Ibelin’ was released and the impact it’s had across the world.
Muscular Dystrophy UK, the leading charity for over 110,000 people in the UK living with one of over 60 muscle-wasting and weakening conditions, spoke with the Norwegian Director about the documentary that explores the life of gamer Mats Steen, who lived with Duchenne muscular dystrophy.
Following his death aged 25, Mats’ parents gained access to his blog and discovered deep friendships he created virtually over the years of gaming. Unaware he’d been leading a vibrant digital life that left a profound impact on a community of fellow gamers, the film explores 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.
Benjamin said:
“I really want to tell stories about normal people doing extraordinary things, and Mats was that kind of person. I’m very fond of stories about friendships, human kindness, coming of age stories and all of that I saw in Ibelin’s story.
“Although Mats lived a short life, he made such a huge difference in so many different people’s lives. I really wanted to tell his story, in a nuanced and complex way, in the portrayal of him. I also knew that Mats really wanted to be remembered, and that was one of his biggest wishes before he died. So, I hope that the film honours that wish.”
At the time of launch (October 2024), Muscular Dystrophy UK and Netflix held an intimate discussion with Benjamin Ree, moderated by television presenter and broadcaster, Elle Osili-Wood.
People from the muscle wasting and weakening community were invited to share their lived experience of having a neuromuscular condition, along with thoughts on everything gaming, accessibility and the documentary.
If you have been affected by the film and would like to speak to someone, call Muscular Dystrophy UK’s free helpline 0800 652 6352 (open Monday – Thursday, 10am – 2pm).
Passionate about gaming? Take part in Muscular Dystrophy UK’s Game On musculardystrophyuk.org/GameOn.
