Documentary films: A disabled boy’s rich digital life recreated in an extraordinary film where he feels valued

The night after their son Mats passed away at the age of 25, Trude and Robert Steen found themselves unable to sleep in their living room in Oslo, accompanied by their daughter Mia. The day was a blur for them, but then Robert suggested reaching out to Mats’ friends in World of Warcraft. Mats had been born with Duchenne muscular dystrophy, a condition that weakens the muscles over time. He was diagnosed at the age of four and started using a wheelchair at 10. As his condition progressed, Mats could only move his fingers and needed assistance to clear his throat every 15 minutes. Despite his limitations, Mats spent a significant amount of time gaming, accumulating 20,000 hours of gameplay in his last decade.

Trude and Robert were unsure of how to inform Mats’ online friends about his passing. Without access to his WoW account, Robert managed to find the password to Mats’ blog, where they posted the news of his death. The response they received was overwhelming, with messages pouring in from all over the world expressing condolences and sharing fond memories of Mats. This outpouring of support from his online friends came as a surprise to Trude and Robert, who had previously thought Mats led a lonely existence due to his illness.

A decade earlier, Mats had created an alter ego in WoW named Lord Ibelin Redmoore. Through this character, Mats had formed deep connections within the gaming community, a fact that his parents only discovered after his passing. The story of Mats’ life and his online friendships is now the subject of a documentary titled The Remarkable Life of Ibelin, which is set to be released in cinemas and on Netflix.

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In the film, viewers are taken on a journey through Mats’ life, narrated through home videos captured by the Steen family. The emotional impact of Mats’ illness and the bond shared within the family is palpable in these recordings. Trude opens up about the guilt she feels as the carrier of the Duchenne gene, reflecting on her close relationship with Mats and the sacrifices she made to care for him.

Mats’ own words, shared through his blog, reveal his passion for gaming and the sense of freedom it provided him. He expressed that gaming was not just a screen, but a gateway to fulfilling his desires. The documentary also delves into Mats’ virtual life in WoW, showcasing the relationships he formed and the solace he found in the gaming world.

The Remarkable Life of Ibelin aims to offer a balanced perspective on gaming, celebrating the positive aspects of online communities while also acknowledging the challenges they can present. Mats’ story highlights the importance of understanding and supporting individuals who find solace in virtual worlds, like WoW.

Trude and Robert’s decision to invite Mats’ online friends to his funeral reflects their desire to honor his memory and continue his legacy. Mats had expressed a wish to be remembered and make a difference in the lives of others, a sentiment that his parents hold dear.

The Remarkable Life of Ibelin is now showing in UK cinemas and will be available on Netflix from October 25th.