One person’s impact can ripple far beyond what they ever imagined.
Mats Steen, a young Norwegian man with a muscle disease, had no idea how he would open the eyes of so many to the power of community through video gaming. He had no idea that his story would lead to millions of dollars being raised for research focusing on curing his rare disease.
The Netflix documentary “The Remarkable Life of Ibelin” tells Mats’ story, nearly 10 years after he passed away from a serious muscle condition. He touched countless lives through the online relationships he built in the video game World of Warcraft.
I’m thankful that Mats had a heart for helping others while playing World of Warcraft. I’m thankful to Mats’ parents, Robert and Trude, for having the courage to share their story. I’m also thankful to have played a role in the impact the documentary has made on the world.
I have the same rare neuromuscular disease Mats had, known as Duchenne muscular dystrophy. I am also the son of the founders of CureDuchenne, the Newport Beach-based global nonprofit that will use the funds raised to drive groundbreaking research and essential care for other young men affected by Duchenne.
An incredible partnership between CureDuchenne and Blizzard Entertainment, the Irvine-based developer of World of Warcraft, was kindled last year at the 2024 Sundance Film Festival, where “The Remarkable Life of Ibelin” premiered and received prestigious film awards.
Having met Mats’ parents in Oslo, Norway, in 2022 and seeing an early version of the documentary, we flew to Park City, Utah, to support Mats’ parents and the filmmakers. There, we had a chance meeting with the executive producer of World of Warcraft, Holly Longdale.
That meeting eventually led to the creation of a limited edition in-game pet named Reven, (“the fox” in Norwegian). Reven was available for World of Warcraft players to purchase for a limited time, between October 2024 through January 2025, with proceeds supporting CureDuchenne in tribute to Mats.
The gaming community responded generously with their pocketbooks in honor of Mats, raising $2 million for CureDuchenne. The campaign also raised global awareness of Duchenne, and the support was felt by me and the thousands of other boys and young men affected by Duchenne muscular dystrophy. Without the entire Blizzard team behind this initiative, none of this would have happened. I’m immensely grateful for their support.
I encourage you to watch “The Remarkable Life of Ibelin” on Netflix – it carries a powerful and memorable message. It shows you that a story told well has infinite potential.
It was nominated for the shortlist in the Documentary Feature Film category for the upcoming Oscars; however, the film didn’t make the final round for the awards ceremony, which is scheduled for March 2.
What follows is an abridged film review that I wrote last November on my personal perspective on the film:
When the Power of Humanity Expands into the Digital Realm
When Mats Steen passed away from Duchenne muscular dystrophy at 25, his parents were inconsolable. They had outlived their son, who lived what they saw as an isolated and lonely life due to the physical limitations caused by the degenerative neuromuscular disease.
“The biggest pain your mother and I suffered through life was that you, because of the illness we brought you into this world with, should not experience falling in love. You should not experience friendship. You should not experience social relationships and joint activities with others. You should not experience contributing to society and playing a meaningful role in other people’s lives,” Robert said during his son’s funeral. “This was by far our biggest sorrow.”
But that changed one day, after his passing, when they discovered he had forged a strong community of people through the massive online role-playing game World of Warcraft, where he was known as Ibelin. Emails of sympathy and support flooded their inbox after Mats’ online friends discovered he had died. In fact, five of them flew out from various parts of Europe to attend his funeral in his home country of Norway. What Mats’ parents once thought was completely turned on its head.
Armed with 42,000 pages of chat logs, essentially Mats’ online footprint in World of Warcraft, Mats’ blog, an animator, and hundreds of hours of home videos, director Benjamin Ree crafted a powerful story about Mats life with Duchenne but also his full life in World of Warcraft.
I can draw the parallels between Mats’ life and my own. I also fell into video games because it was a way for me to be competitive and keep up to date with friends. I could do so many things in Star Wars Battlefront II, Halo Reach and Call of Duty that would have been impossible with Duchenne. I understand, especially knowing that it was difficult for Mats to get out to see people in person, how important this was for him.
I also understand that it was possible for him to make a difference there. This was also the closest thing that gave him relationships. He interacted romantically and as a friend through virtual hugs, kisses and dialogue. Mats could have decided to be mean and cynical online, (and, like all of us, he had his moments, as the documentary shows), but he instead met people with kindness, a listening ear and a willingness to offer help, whether it was reconnecting a mother and her son with autism or getting his friend through depression.
“The Remarkable Life of Ibelin” reaches towards your base human emotions and brings them to the top. When I’m watching with an audience, the sniffles start early, and the river of tears opens by the time we reach the end.
While Mats’ life on earth may have ended, he hasn’t stopped helping people. The awareness he’s bringing to Duchenne through his powerful story is going to help us get closer to a cure so that other boys in the future won’t have to go through the same challenges he did. It’s stories like this that bring us together and set us on a path towards making the world a better place.
Editor’s Note: For more information on Hawken’s Newport Beach-based nonprofit: cureduchenne.org
