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‘I can show this film to my parents, and they will understand better’: Director of touching WoW documentary The Remarkable Life of Ibelin reflects on the importance of online communities as sanctuaries

The Remarkable Life of Ibelin didn’t touch my heart so much as barged in, broke some bones to reset them for healing, and left me a puddle of tears in the emotional ER. It’s a deeply impactful and heartfelt story about the vital importance of online community in the lives of those who’d otherwise be isolated and alone. In case you aren’t familiar, the film is a documentary following the life of the late Mats Steen, which came to Netflix this year after a successful release in Norway in March.

Mats Steen had something called Duchenne muscular dystrophy (DMD), a medical condition that causes muscles to weaken over the course of a person’s life. There are several kinds of muscular dystrophy, but Duchenne is characterised by its severity, and has a life expectancy of around 20 to 30 years. Steen died in 2014, aged 25, and you can read his blog in full (including the farewell message from his parents) here.

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