When Mats Steen was a little boy, he liked a small ceramic fox. In his native Norway, a fox is a “reven.”
His mom, Trude, says he carried all over the place. Again then, he might nonetheless stroll on his own.
He was 7 years outdated when a wheelchair arrived at his home. His mother and father anticipated he would want it quickly, as his muscle tissues weakened because of a rare situation, Duchenne muscular dystrophy. He hated the wheelchair, so it stayed within the hallway. Though he was stumbling and falling, he didn’t wish to use it. Ultimately, he needed to.
As an grownup he was given a miniature fox as a birthday reward, one thing that was expensive to him and that he noticed on daily basis on his front room shelf. When Mats handed away in 2014 on the age of 25, the Steens designed a headstone with a fox carving.
A digital model of that headstone seems in World of Warcraft (WoW), a massively multiplayer on-line sport (MMO) that was a huge half of their son’s final eight years of life. What they didn’t know till after he died was how huge of an impression he made on others whereas he was there.
The general public meets the non-public eye
Within the role-playing atmosphere of World of Warcraft, Mats was often called Ibelin, a sturdy and charming non-public investigator with a muscular physique and lengthy crimson hair. His welcoming smile and light nature made him standard with different gamers.
When WoW created an in-game tribute to him, the Reven Pack, which might additionally elevate funds for CureDuchenne, a corporation that helps analysis, early prognosis and entry to therapy, the sport’s producers selected a wily fox sporting a detective hat who may very well be carried by gamers in his own customized backpack.
In a bit of kismet, the World of Warcraft artist who created the character, backpack and headstone for the fundraising collaboration can also be named Mats and can also be Norwegian. The fundraiser runs via Jan. 7, 10 a.m. PST*.
In January, “The Remarkable Life of Ibelin” premiered on the 2024 Sundance Movie Competition, the place it received over audiences with the story of Mats and his life within World of Warcraft, a legacy that surpasses the digital house.
Norwegian filmmaker Benjamin Ree learn a BBC article about Mats in 2019 and was impressed to hunt out the Steens and Mats’ pals in WoW to make a movie about his story.
At Sundance, Ree’s documentary won the Directing and Viewers awards within the World Cinema/Documentary class, resulting in a streaming cope with Netflix. Subscribers have been capable of start watching it in late October earlier than the tenth anniversary of Mats’ loss of life on Nov. 18. It’s additionally on the shortlist within the Documentary Characteristic Movie class for the 97th Academy Awards (2025).
In honor of the impression Mats made in Norway, the nation created the Ibelin Award, which will probably be granted yearly beginning in autumn 2025 to a individual thought-about a position mannequin for avid gamers – somebody who takes care of others.
Making a distinction with out ever assembly in individual
Mats’ avatar as a non-public investigator wasn’t solely fictional. He stored his wealthy gaming life and group non-public – so his impression was a shock even to his mother and father.
“We knew that he was a good listener, however we had no respect for the digital gaming platform being an space the place you might truly use this potential for something,” says Robert Steen, who served 4 years as Oslo’s vice mayor of finance and 4 years as vice mayor of well being.
He and his spouse even have an older daughter, Mia. “We have been very a lot basic mother and father born within the ‘60s and we tried to restrict the quantity of hours they spent in entrance of the display screen. We had no concept about all these individuals he had interacted with and helped in several methods.”
Robert recalled one of Mats’ pals in World of Warcraft, Lisette (aka “Hearsay”), who can also be distinguished within the movie.
“Her mother and father thought they have been going to assist her by taking her laptop away,” he says. “However what they really did with out realizing it was to take her pals away, which led to this very deep despair that might have gone flawed if she didn’t have individuals like Mats to be there for her and lead her via that course of.”
The movie exhibits how Mats wrote Lisette’s mother and father a letter to elucidate how vital being half of their World of Warcraft group was, and that it was a actual group who met in actual life.
Mats, although, resisted these in-person conferences. He might nonetheless discuss at that stage of the illness, however he selected to not go on digicam or take part in voice chats together with his many pals within the sport. It took a very long time for him to disclose his situation to them, and when he did so, it was via a blog post.
His mother and father used that very same weblog to inform his on-line pals about his loss of life and to depart their e mail tackle. The following day, messages from his group poured in.
‘Emotional coronary heart of the guild’
Kai Simon Fredriksen, who can also be based mostly in Oslo, met Mats in World of Warcraft via their group – the Starlight Guild. Guilds are player-organized teams that present a social construction for WoW avid gamers. Within these teams, they will chat with one another, workforce up on quests and missions, and share experiences.
Fredriksen calls them “the emotional coronary heart of the guild.” For him, it’s these connections that make World of Warcraft – a franchise that spans 20 years – so partaking. He’s tried different MMOs, however he retains coming again to this sport. “It’s the individuals, the group,” he says.
WoW is a social place the place you will have room to inform tales – notably vital for position gamers like him. Quickly after he joined, Fredriksen, whose character is a con artist, grew to become the chief of the Starlight Guild. At its most energetic, there have been 40 to 50 gamers within the group.
“For those who discover your tribe, you discover individuals who benefit from the form of gaming expertise and group you do,” he says. “You’ve gotten a assist community and individuals to indicate you new issues.”
Mats, via his Ibelin character, discovered Starlight via the guild’s occasions all through the sport. Fredriksen says their group had a good fame and have been seen as one of the extra critical and established role-playing guilds, so gamers utilized to affix them. As soon as he turned 16, Mats submitted his software.
The rigorous software course of included two interviews, each in character and out of character, vetted by a number of Starlight members. Mats appeared to be a good match for Starlight, somebody Fredriksen might think about on adventures, who can be dependable, enjoyable and partaking.
What particularly stood out to Fredriksen about Mats have been his questions. He persistently took the time to pay attention. When he requested a fellow gamer why she was upset, for instance, and discovered that she was struggling to attach together with her teenage son, he provided recommendations.
These conversations come to life within the movie, which used authentic animation, dozens of videocassettes from the Steens documenting Mats’ life and 1000’s of hours of logged chats from Starlight to recreate poignant moments Mats skilled within the sport.
A life ends, a legacy begins
Fredriksen didn’t find out about his good friend’s situation till almost the tip of Mats’ life. After Mats handed away, the guild collected cash so members might attend his funeral.
Yearly on the anniversary of his loss of life, members of the guild be a part of different WoW gamers to run the identical route within the sport that Mats’ character Ibelin usually ran when he logged on. This 12 months’s run was essentially the most attended ever, due to the eye generated by the Netflix documentary. In non-public earlier that day, the guild honors him at a memorial service that his mother and father attend as their shared dwarf avatar, whose title is Stoen2 (Ibelin’s finest good friend in WoW was a dwarf referred to as Stoen).
“[The Steens] have come to grasp gaming so significantly better, and they wish to discuss to different mother and father about this,” Fredriksen says. “It’s a very private and painful story. Nevertheless it’s additionally common within the expertise of being in a group, of having individuals interact with you and construct relationships.”
Sharing a new understanding of gaming with different mother and father
After Mats died, the Steens discovered solace in a new understanding of their son’s vibrant inside life. That he had stored it non-public ignited a hearth in them: to assist different mother and father understand the advantages of gaming and the way it fosters connections amongst gamers.
“We’ve been asking ourselves the query, ‘Why did we not see this whereas he was alive?’ As a result of we lived beneath the identical roof for all his life, we noticed one another on daily basis and nonetheless there have been so many issues we didn’t see. We don’t find out about them as a result of an important issues of our lives occur inside our heads,” says Robert.
“We solely tried to take a seat beside him and watch the display screen with out understanding what was occurring. So, after half an hour or so, we bought bored. We left for the true display screen, which is named tv in Norway. Soccer was on the tv, and I perceive soccer.”
Gaming is the largest leisure exercise in Norway – greater than 85% of all teenagers sport usually. The Steens have change into extra knowledgeable concerning the nationwide pastime and are obsessed with discussing it with different mother and father.
“If we as mother and father ought to have any likelihood of being guiding and supporting forces, we have to perceive what’s going on on this digital world,” Robert says. “You shouldn’t take over their world, however you must present respect and curiosity.”
Hawken Miller is grateful to the Steens for passing on their classes to his mother and father. Like Mats, he has Duchenne and is a longtime gamer. He’ll flip 28 on the final day of the World of Warcraft charity marketing campaign.
He was about 6 years outdated when his mother and father gave him a Recreation Boy, and he ultimately constructed his own PC gaming rig as a result of it was simpler to play with a keyboard and mouse. As a journalist, he lined esports, creating weapon loadout guides for The Washington Submit and sport critiques.
“I’m glad that this documentary may also help my mother and many different mother and father perceive that there’s extra to what meets the attention,” says Hawken. “You’re attempting to be somebody you aren’t in actual life, and it’s particularly highly effective if somebody has a incapacity and they will’t do all these issues. It’s the closest factor that they may come to doing it in actual life, in order that undoubtedly resonated with me.”
He says that simply being in a sport with others usually supplies the socializing that folks crave of their busy lives.
“If you recognize it’s 6:30 p.m., on a weekday and some of the fellows are going to be on, simply to have that place to hang around and play with them, is constructing a connection, even in case you aren’t speaking about your lives,” he says.
Hawken’s mom, Debra Miller, who based CureDuchenne greater than 20 years in the past after Hawken was identified, says she was a “typical mother” who gave her son a laborious time about spending an excessive amount of time on video video games, particularly after he graduated from USC in 2019 and moved again dwelling. That become an prolonged keep when the pandemic lockdowns occurred. It took reading about Mats and assembly the Steens to alter her viewpoint on gaming.
“After we got here again, there was one night time that my husband and I have been watching TV, and we might hear Hawken taking part in a sport on-line and he was laughing, trash speaking and simply having a nice time. It gave me a complete totally different perspective on what he’s doing,” she says. “Beforehand, I thought-about his time on video video games to be completely leisure and on the expense of both college or work or true relationships, however I’m now capable of higher perceive the relationship-building within the sport.”
Each era is luckier than the earlier era
Debra, Hawken’s mother, is hopeful that new therapies on the horizon will enable her son and others with Duchenne to stay longer, a direct outcome of the work her group has funded over the previous 20 years.
“Each era is luckier than the earlier era,” she says of the developments in therapy.
She had by no means heard of Duchenne — a rare genetic situation that causes progressive muscle harm and weak point — earlier than Hawken’s prognosis. She labored in promoting gross sales and expertise earlier than founding CureDuchenne.
The nonprofit group helps fund early-stage biotech corporations that develop promising, novel science for treating Duchenne and has invested greater than $26 million in analysis since its creation greater than 20 years in the past. These investments have paved the way in which for enterprise capital corporations and pharmaceutical corporations to speculate a further $3.65 billion instantly into these biotech corporations, additional advancing their applications.
CureDuchenne has additionally created sources and assist workshops across the nation for households with Duchenne, together with an annual nationwide convention that includes a gaming lounge the place youngsters from across the nation can play video video games collectively.
‘Video games can change lives’
Whereas Blizzard, the studio behind WoW, had reached out to the Steens after studying about Mats in 2019, they have been unaware of the movie till it had already been within the works for 3 years. As soon as they screened the almost-finished model, they granted their full assist to make use of their mental property within the animation.
“There are moments on this enterprise the place you acknowledge that we make leisure, however generally it’s greater than that,” says Holly Longdale, a 20-year-plus veteran within the gaming business and govt producer of World of Warcraft. “We actually see the impression on somebody’s life, how video games can change lives. These are the reminiscences in a profession that basically matter.”
Mats’ memorial has drawn not simply those that knew him, however others who wish to bear in mind somebody they misplaced, says Longdale, whose profession has targeted primarily on MMOs. She isn’t shocked that bonds are so significant and longstanding within WoW. She’s identified gamers who’ve met in-game, gotten married, had kids and now play with their kids in-game.
Folks begin connecting with one another based mostly on how they play, so that they discover one another on the planet, she says. Mats and his guild discovered one another, partially, as a result of they recognized as like-minded position gamers.
“The wonder and relatability of World of Warcraft as a world is definitely epic. And it may be darkish, combating monsters and stuff,” Longdale says.
“However the world itself is full of whimsy, humor, love and life. And it’s a place you may simply hand around in. For instance, within the cities, there’s all the time individuals milling about and individuals dancing on mailboxes. Even in case you’re simply on by your self, you by no means really feel alone.”
Purchase the Reven Pack* by Jan. 7, 10 a.m. PST to assist CureDuchenne.
Lead picture: Mats Steen, as seen in “The Outstanding Life of Ibelin.” (Picture courtesy of Robert and Trude Steen/Netflix Studios)
* Now via January 7, 2025, 10 a.m. PST, Blizzard Leisure will donate 100% of the acquisition value of “The Reven Pack” digital bundle to CureDuchenne, much less any chargebacks, refunds, transaction charges, and Worth Added Taxes (VAT), or different comparable taxes paid. These variations of objects are particular editions accessible as half of this initiative solely. Shopping for or buying this digital merchandise is a license.