When Mats Steen was a little boy, he loved a small ceramic fox. In his native Norway, a fox is a “reven.”
His mother, Trude, says he carried everywhere. Back then, he could still walk on his own.
He was 7 years old when a wheelchair arrived at his house. His parents anticipated he would need it soon, as his muscles weakened due to a rare condition, Duchenne muscular dystrophy. He hated the wheelchair, so it stayed in the hallway. Even though he was stumbling and falling, he didn’t want to use it. Eventually, he had to.
As an adult he was given a miniature fox as a birthday gift, something that was dear to him and that he saw every day on his living room shelf. When Mats passed away in 2014 at the age of 25, the Steens designed a gravestone with a fox carving.
A virtual version of that gravestone appears in World of Warcraft (WoW), a massively multiplayer online game (MMO) that was a big part of their son’s last eight years of life. What they didn’t know until after he died was how big of an impact he made on others while he was there.
The public meets the private eye
In the role-playing environment of World of Warcraft, Mats was known as Ibelin, a robust and charming private investigator with a muscular physique and long red hair. His welcoming smile and gentle nature made him popular with other players.
When WoW created an in-game tribute to him, the Reven Pack, which would also raise funds for CureDuchenne, an organization that supports research, early diagnosis and access to treatment, the game’s producers chose a wily fox wearing a detective hat who could be carried by players in his own custom backpack.
In a bit of kismet, the World of Warcraft artist who created the character, backpack and gravestone for the fundraising collaboration is also named Mats and is also Norwegian. The fundraiser runs through Jan. 7, 10 a.m. PST*.
In January, “The Remarkable Life of Ibelin” premiered at the 2024 Sundance Film Festival, where it won over audiences with the story of Mats and his life within World of Warcraft, a legacy that surpasses the digital space.
Norwegian filmmaker Benjamin Ree read a BBC article about Mats in 2019 and was inspired to seek out the Steens and Mats’ friends in WoW to make a film about his story.
At Sundance, Ree’s documentary won the Directing and Audience awards in the World Cinema/Documentary category, leading to a streaming deal with Netflix. Subscribers were able to begin watching it in late October before the 10th anniversary of Mats’ death on Nov. 18. It’s also on the shortlist in the Documentary Feature Film category for the 97th Academy Awards (2025).
In honor of the impact Mats made in Norway, the country created the Ibelin Award, which will be granted every year starting in autumn 2025 to a person considered a role model for gamers – someone who takes care of others.
Making a difference without ever meeting in person
Mats’ avatar as a private investigator wasn’t entirely fictional. He kept his rich gaming life and community private – so his impact was a surprise even to his parents.
“We knew that he was a good listener, but we had no respect for the digital gaming platform being an area where you could actually use this ability for anything,” says Robert Steen, who served four years as Oslo’s vice mayor of finance and four years as vice mayor of health.
He and his wife also have an older daughter, Mia. “We were very much classic parents born in the ‘60s and we tried to limit the number of hours they spent in front of the screen. We had no idea about all these people he had interacted with and helped in different ways.”
Robert recalled one of Mats’ friends in World of Warcraft, Lisette (aka “Rumour”), who is also prominent in the film.
“Her parents thought they were going to help her by taking her computer away,” he says. “But what they actually did without knowing it was to take her friends away, which led to this very deep depression that could have gone wrong if she didn’t have people like Mats to be there for her and lead her through that process.”
The film shows how Mats wrote Lisette’s parents a letter to explain how important being part of their World of Warcraft community was, and that it was a real community who met in real life.
Mats, though, resisted those in-person meetings. He could still talk at that stage of the disease, but he chose not to go on camera or participate in voice chats with his many friends in the game. It took a long time for him to reveal his condition to them, and when he did so, it was through a blog post.
His parents used that same blog to tell his online friends about his death and to leave their email address. The next day, messages from his community poured in.
‘Emotional heart of the guild’
Kai Simon Fredriksen, who is also based in Oslo, met Mats in World of Warcraft through their community – the Starlight Guild. Guilds are player-organized groups that provide a social structure for WoW gamers. Within these groups, they can chat with each other, team up on quests and missions, and share experiences.
Fredriksen calls them “the emotional heart of the guild.” For him, it’s those connections that make World of Warcraft – a franchise that spans 20 years – so engaging. He’s tried other MMOs, but he keeps coming back to this game. “It’s the people, the community,” he says.
WoW is a social place where you have room to tell stories – particularly important for role players like him. Soon after he joined, Fredriksen, whose character is a con artist, became the leader of the Starlight Guild. At its most active, there were 40 to 50 players in the group.
“If you find your tribe, you find people who enjoy the kind of gaming experience and community you do,” he says. “You have a support network and people to show you new things.”
Mats, through his Ibelin character, found Starlight through the guild’s events throughout the game. Fredriksen says their group had a good reputation and were seen as one of the more serious and established role-playing guilds, so players applied to join them. Once he turned 16, Mats submitted his application.
The rigorous application process included two interviews, both in character and out of character, vetted by several Starlight members. Mats seemed to be a good fit for Starlight, someone Fredriksen could imagine on adventures, who would be reliable, fun and engaging.
What especially stood out to Fredriksen about Mats were his questions. He consistently took the time to listen. When he asked a fellow gamer why she was upset, for example, and learned that she was struggling to connect with her teenage son, he offered suggestions.
Those conversations come to life in the film, which used original animation, dozens of videocassettes from the Steens documenting Mats’ life and thousands of hours of logged chats from Starlight to recreate poignant moments Mats experienced in the game.
A life ends, a legacy begins
Fredriksen didn’t know about his friend’s condition until nearly the end of Mats’ life. After Mats passed away, the guild collected money so members could attend his funeral.
Every year on the anniversary of his death, members of the guild join other WoW players to run the same route in the game that Mats’ character Ibelin regularly ran when he logged on. This year’s run was the most attended ever, thanks to the attention generated by the Netflix documentary. In private earlier that day, the guild honors him at a memorial service that his parents attend as their shared dwarf avatar, whose name is Stoen2 (Ibelin’s best friend in WoW was a dwarf called Stoen).
“[The Steens] have come to understand gaming so much better, and they want to talk to other parents about this,” Fredriksen says. “It’s a very personal and painful story. But it’s also universal in the experience of being in a community, of having people engage with you and build relationships.”
Sharing a new understanding of gaming with other parents
After Mats died, the Steens found solace in a new understanding of their son’s vibrant inner life. That he had kept it private ignited a fire in them: to help other parents realize the benefits of gaming and how it fosters connections among players.
“We’ve been asking ourselves the question, ‘Why did we not see this while he was alive?’ Because we lived under the same roof for all his life, we saw each other every day and still there were so many things we did not see. We don’t know about them because the most important things of our lives happen inside our heads,” says Robert.
“We only tried to sit beside him and watch the screen without understanding what was going on. So, after half an hour or so, we got bored. We left for the real screen, which is called television in Norway. Football was on the television, and I understand football.”
Gaming is the biggest leisure activity in Norway – more than 85% of all teens game regularly. The Steens have become more informed about the national pastime and are passionate about discussing it with other parents.
“If we as parents should have any chance of being guiding and supporting forces, we need to understand what is going on in this digital world,” Robert says. “You shouldn’t take over their world, but you should show respect and curiosity.”
Hawken Miller is grateful to the Steens for passing on their lessons to his parents. Like Mats, he has Duchenne and is a longtime gamer. He will turn 28 on the last day of the World of Warcraft charity campaign.
He was about 6 years old when his parents gave him a Game Boy, and he eventually built his own PC gaming rig because it was easier to play with a keyboard and mouse. As a journalist, he covered esports, creating weapon loadout guides for The Washington Post and game reviews.
“I’m glad that this documentary can help my mom and many other parents understand that there’s more to what meets the eye,” says Hawken. “You’re trying to be someone you aren’t in real life, and it’s especially powerful if someone has a disability and they can’t do all those things. It’s the closest thing that they could come to doing it in real life, so that definitely resonated with me.”
He says that just being in a game with others regularly provides the socializing that people crave in their busy lives.
“If you know it’s 6:30 p.m., on a weekday and some of the guys are going to be on, just to have that place to hang out and play with them, is building a connection, even if you aren’t talking about your lives,” he says.
Hawken’s mother, Debra Miller, who founded CureDuchenne more than 20 years ago after Hawken was diagnosed, says she was a “typical mom” who gave her son a hard time about spending too much time on video games, especially after he graduated from USC in 2019 and moved back home. That turned into an extended stay when the pandemic lockdowns happened. It took reading about Mats and meeting the Steens to change her viewpoint on gaming.
“After we came back, there was one night that my husband and I were watching TV, and we could hear Hawken playing a game online and he was laughing, trash talking and just having a great time. It gave me a whole different perspective on what he’s doing,” she says. “Previously, I considered his time on video games to be totally recreational and at the expense of either school or work or true relationships, but I am now able to better understand the relationship-building within the game.”
Every generation is luckier than the previous generation
Debra, Hawken’s mom, is hopeful that new treatments on the horizon will allow her son and others with Duchenne to live longer, a direct result of the work her organization has funded over the past two decades.
“Every generation is luckier than the previous generation,” she says of the advancements in treatment.
She had never heard of Duchenne — a rare genetic condition that causes progressive muscle damage and weakness — before Hawken’s diagnosis. She worked in advertising sales and technology before founding CureDuchenne.
The nonprofit organization helps fund early-stage biotech companies that develop promising, novel science for treating Duchenne and has invested more than $26 million in research since its creation more than 20 years ago. These investments have paved the way for venture capital firms and pharmaceutical companies to invest an additional $3.65 billion directly into these biotech companies, further advancing their programs.
CureDuchenne has also created resources and support workshops around the country for families with Duchenne, including an annual national conference featuring a gaming lounge where kids from around the country can play video games together.
‘Games can change lives’
While Blizzard, the studio behind WoW, had reached out to the Steens after reading about Mats in 2019, they were unaware of the film until it had already been in the works for three years. Once they screened the almost-finished version, they granted their full support to use their intellectual property in the animation.
“There are moments in this business where you recognize that we make entertainment, but sometimes it’s more than that,” says Holly Longdale, a 20-year-plus veteran in the gaming industry and executive producer of World of Warcraft. “We really see the impact on someone’s life, how games can change lives. Those are the memories in a career that really matter.”
Mats’ memorial has drawn not just those who knew him, but others who want to remember someone they lost, says Longdale, whose career has focused mainly on MMOs. She isn’t surprised that bonds are so meaningful and longstanding within WoW. She’s known players who’ve met in-game, gotten married, had children and now play with their children in-game.
People start connecting with each other based on how they play, so they find each other in the world, she says. Mats and his guild found each other, in part, because they identified as like-minded role players.
“The beauty and relatability of World of Warcraft as a world is certainly epic. And it can be dark, fighting monsters and stuff,” Longdale says.
“But the world itself is full of whimsy, humor, love and life. And it is a place you can just hang out in. For example, in the cities, there’s always people milling about and people dancing on mailboxes. Even if you’re just on by yourself, you never feel alone.”
Buy the Reven Pack* by Jan. 7, 10 a.m. PST to support CureDuchenne.
Lead photo: Mats Steen, as seen in “The Remarkable Life of Ibelin.” (Photo courtesy of Robert and Trude Steen/Netflix Studios)
* Now through January 7, 2025, 10 a.m. PST, Blizzard Entertainment will donate 100% of the purchase price of “The Reven Pack” digital bundle to CureDuchenne, less any chargebacks, refunds, transaction fees, and Value Added Taxes (VAT), or other similar taxes paid. These versions of items are special editions available as part of this initiative only. Buying or purchasing this digital item is a license.