When Mats Steen was somewhat boy, he liked a small ceramic fox. In his native Norway, a fox is a “reven.”
His mom, Trude, says he carried in every single place. Again then, he might nonetheless stroll on his personal.
He was 7 years previous when a wheelchair arrived at his home. His dad and mom anticipated he would want it quickly, as his muscle groups weakened attributable to a uncommon situation, Duchenne muscular dystrophy. He hated the wheelchair, so it stayed within the hallway. Despite the fact that he was stumbling and falling, he didn’t wish to use it. Finally, he needed to.
World of Warcraft gamers assembled at Ibelin’s headstone in-game.
As an grownup he was given a miniature fox as a birthday reward, one thing that was pricey to him and that he noticed each day 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 recreation (MMO) that was a giant a part of their son’s final eight years of life. What they didn’t know till after he died was how large of an affect he made on others whereas he was there.
The general public meets the non-public eye
Within the role-playing setting of World of Warcraft, Mats was referred to as Ibelin, a sturdy and charming non-public investigator with a muscular physique and lengthy pink hair. His welcoming smile and mild nature made him fashionable with different gamers.
Ibelin and Hearsay as seen in “The Exceptional Lifetime of Ibelin.” (World of Warcraft and Blizzard Leisure © 2024/Courtesy of Netflix)
When WoW created an in-game tribute to him, the Reven Pack, which might additionally increase 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 could possibly be carried by gamers in his personal customized backpack.
In a little bit of kismet, the World of Warcraft artist who created the character, backpack and headstone for the fundraising collaboration can be named Mats and can be Norwegian. The fundraiser runs by Jan. 7, 10 a.m. PST*.
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In January, “The Exceptional Lifetime of Ibelin” premiered on the 2024 Sundance Movie Pageant, the place it received over audiences with the story of Mats and his life inside 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 received the Directing and Viewers awards within the World Cinema/Documentary class, resulting in a streaming cope with Netflix. Subscribers had been in a position to start watching it in late October earlier than the tenth anniversary of Mats’ demise on Nov. 18. It’s additionally on the shortlist within the Documentary Function Movie class for the 97th Academy Awards (2025).
In honor of the affect Mats made in Norway, the nation created the Ibelin Award, which shall be granted yearly beginning in autumn 2025 to an individual thought of a job mannequin for players – somebody who takes care of others.
Reven Pack proven on an avatar. (Screenshot courtesy of Blizzard)
Making a distinction with out ever assembly in individual
Mats’ avatar as a personal investigator wasn’t completely fictional. He stored his wealthy gaming life and neighborhood non-public – so his affect was a shock even to his dad and mom.
“We knew that he was a superb listener, however we had no respect for the digital gaming platform being an space the place you would truly use this means 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 had been very a lot traditional dad and mom born within the ‘60s and we tried to restrict the variety of hours they spent in entrance of the display. We had no concept about all these individuals he had interacted with and helped in numerous methods.”
Trude and Robert Steen in “The Exceptional Lifetime of Ibelin.” (Photograph courtesy of Netflix Studios)
Robert recalled one among Mats’ pals in World of Warcraft, Lisette (aka “Hearsay”), who can be outstanding within the movie.
“Her dad and mom thought they had been going to assist her by taking her pc 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 by that course of.”
The movie reveals how Mats wrote Lisette’s dad and mom a letter to elucidate how essential being a part of their World of Warcraft neighborhood was, and that it was an actual neighborhood who met in actual life.
Members of the Starlight Guild assembly up in-person. (Photograph courtesy of Netflix Studios)
Mats, although, resisted these in-person conferences. He might nonetheless speak at that stage of the illness, however he selected to not go on digicam or take part in voice chats along with his many pals within the recreation. It took a very long time for him to disclose his situation to them, and when he did so, it was by a weblog submit.
His dad and mom used that very same weblog to inform his on-line pals about his demise and to go away their e mail deal with. The following day, messages from his neighborhood poured in.
‘Emotional coronary heart of the guild’
Kai Simon Fredriksen, who can be primarily based in Oslo, met Mats in World of Warcraft by their neighborhood – the Starlight Guild. Guilds are player-organized teams that present a social construction for WoW players. Inside these teams, they will chat with one another, group 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 participating. He’s tried different MMOs, however he retains coming again to this recreation. “It’s the individuals, the neighborhood,” he says.
Starlight Guild assembled inside World of Warcraft with Ibelin. (World of Warcraft and Blizzard Leisure © 2024/Courtesy of Netflix)
WoW is a social place the place you’ve got room to inform tales – significantly essential for function gamers like him. Quickly after he joined, Fredriksen, whose character is a con artist, turned the chief of the Starlight Guild. At its most lively, there have been 40 to 50 gamers within the group.
“Should you discover your tribe, you discover individuals who benefit from the sort of gaming expertise and neighborhood you do,” he says. “You will have a help community and folks to point out you new issues.”
Mats, by his Ibelin character, discovered Starlight by the guild’s occasions all through the sport. Fredriksen says their group had a superb repute and had been seen as one of many extra severe and established role-playing guilds, so gamers utilized to affix them. As soon as he turned 16, Mats submitted his software.
Kai Simon Fredriksen in “The Exceptional Lifetime of Ibelin.” (Photograph courtesy of Netflix Studios)
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 superb match for Starlight, somebody Fredriksen might think about on adventures, who can be dependable, enjoyable and interesting.
What particularly stood out to Fredriksen about Mats had been his questions. He persistently took the time to pay attention. When he requested a fellow gamer why she was upset, for instance, and realized that she was struggling to attach together with her teenage son, he supplied ideas.
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 recreation.
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A life ends, a legacy begins
Fredriksen didn’t find out about his pal’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 demise, members of the guild be part of different WoW gamers to run the identical route within the recreation that Mats’ character Ibelin repeatedly ran when he logged on. This yr’s run was probably the most attended ever, because of the eye generated by the Netflix documentary. In non-public earlier that day, the guild honors him at a memorial service that his dad and mom attend as their shared dwarf avatar, whose identify is Stoen2 (Ibelin’s finest pal in WoW was a dwarf referred to as Stoen).
World of Warcraft avatars honoring Ibelin at an in-game memorial. (World of Warcraft and Blizzard Leisure © 2024/Courtesy of Netflix)
“[The Steens] have come to grasp gaming so a lot better, they usually wish to speak to different dad and mom about this,” Fredriksen says. “It’s a really private and painful story. Nevertheless it’s additionally common within the expertise of being in a neighborhood, of getting individuals have interaction with you and construct relationships.”
Sharing a brand new understanding of gaming with different dad and mom
After Mats died, the Steens discovered solace in a brand new understanding of their son’s vibrant internal life. That he had stored it non-public ignited a hearth in them: to assist different dad and mom notice 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 underneath the identical roof for all his life, we noticed one another each day and nonetheless there have been so many issues we didn’t see. We don’t find out about them as a result of crucial issues of our lives occur inside our heads,” says Robert.
Steen household: Trude, Robert and Mia. (Photograph courtesy of Netflix Studios)
“We solely tried to sit down beside him and watch the display with out understanding what was happening. So, after half an hour or so, we acquired bored. We left for the actual display, 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 recreation repeatedly. The Steens have turn into extra knowledgeable concerning the nationwide pastime and are enthusiastic about discussing it with different dad and mom.
“If we as dad and mom 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 it is best to present respect and curiosity.”
Hawken Miller taking part in World of Warcraft. (Photograph courtesy of Hawken Miller)
Hawken Miller is grateful to the Steens for passing on their classes to his dad and mom. 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 previous when his dad and mom gave him a Recreation Boy, and he ultimately constructed his personal PC gaming rig as a result of it was simpler to play with a keyboard and mouse. As a journalist, he coated esports, creating weapon loadout guides for The Washington Submit and recreation evaluations.
“I’m glad that this documentary can assist my mother and plenty of different dad and mom perceive that there’s extra to what meets the attention,” says Hawken. “You’re making an attempt to be somebody you aren’t in actual life, and it’s particularly highly effective if somebody has a incapacity they usually can’t do all these issues. It’s the closest factor that they might come to doing it in actual life, in order that positively resonated with me.”
He says that simply being in a recreation with others repeatedly supplies the socializing that individuals crave of their busy lives.
“If you realize it’s 6:30 p.m., on a weekday and a number of the guys are going to be on, simply to have that place to hang around and play with them, is constructing a connection, even for those who aren’t speaking about your lives,” he says.
Debra, Hawken and Paul Miller. (Photograph courtesy of Debra Miller)
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 tough time about spending an excessive amount of time on video video games, particularly after he graduated from USC in 2019 and moved again house. That changed into an prolonged keep when the pandemic lockdowns occurred. It took studying about Mats and assembly the Steens to alter her viewpoint on gaming.
“After we got here again, there was one evening that my husband and I had been watching TV, and we might hear Hawken taking part in a recreation on-line and he was laughing, trash speaking and simply having a good time. It gave me a complete totally different perspective on what he’s doing,” she says. “Beforehand, I thought of 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 in a position to higher perceive the relationship-building throughout the recreation.”
Each technology is luckier than the earlier technology
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 results of the work her group has funded over the previous twenty years.
“Each technology is luckier than the earlier technology,” she says of the developments in therapy.
Children taking part in video video games throughout a 2024 Futures Convention organized by CureDuchenne. (Photograph courtesy of CureDuchenne)
She had by no means heard of Duchenne — a uncommon 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 immediately into these biotech corporations, additional advancing their applications.
CureDuchenne has additionally created sources and help 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 had 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 help 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 typically it’s greater than that,” says Holly Longdale, a 20-year-plus veteran within the gaming trade and govt producer of World of Warcraft. “We actually see the affect on somebody’s life, how video games can change lives. These are the recollections in a profession that basically matter.”
Hearsay and Ibelin chasing after a “reven.” (Screenshot courtesy of Blizzard)
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 stunned that bonds are so significant and longstanding inside WoW. She’s recognized gamers who’ve met in-game, gotten married, had kids and now play with their kids in-game.
Folks begin connecting with one another primarily based on how they play, so that they discover one another on this planet, she says. Mats and his guild discovered one another, partly, as a result of they recognized as like-minded function gamers.
“The wonder and relatability of World of Warcraft as a world is actually epic. And it may be darkish, preventing monsters and stuff,” Longdale says.
“However the world itself is stuffed with whimsy, humor, love and life. And it’s a place you possibly can simply hand around in. For instance, within the cities, there’s all the time individuals milling about and folks dancing on mailboxes. Even for those who’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 help CureDuchenne.
Lead picture: Mats Steen, as seen in “The Exceptional Lifetime of Ibelin.” (Photograph courtesy of Robert and Trude Steen/Netflix Studios)
* Now by January 7, 2025, 10 a.m. PST, Blizzard Leisure will donate 100% of the acquisition worth 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 things are particular editions out there as a part of this initiative solely. Shopping for or buying this digital merchandise is a license.
