A Gamer with a Rare Disease Embraces a New Identity and Legacy in World of Warcraft

When Mats Steen was a young boy, he cherished a small ceramic fox, which is called a “reven” in Norway, where he grew up. His mother, Trude, fondly remembers how little Mats would carry it everywhere. Back then, he was still able to walk, but when he turned seven, a wheelchair was delivered to his home. Mats’s parents knew it wouldn’t be long before he needed it, as his muscles were deteriorating due to Duchenne muscular dystrophy. Mats despised the wheelchair, leaving it untouched in the hallway, preferring to stumble rather than use it. Eventually, though, he had to accept it as part of his life.

As he grew older, Mats received another little fox figurine for his birthday, which sat lovingly on his living room shelf. When he passed away in 2014 at age 25, his parents, wanting to honor his love for foxes, designed his gravestone with a fox carving.

In World of Warcraft (WoW), a virtual version of that gravestone can be found. This online world was a huge part of Mats’s life during his last eight years. Unbeknownst to his family, his presence had touched many lives within the game community.

Within the universe of World of Warcraft, Mats embraced his alter ego, Ibelin, a charismatic private investigator with a graceful build and long red hair. His friendly smile and kind demeanor made him a beloved figure among fellow players.

When WoW creators decided to commemorate Mats through an in-game tribute, they introduced the Reven Pack, a character raising funds for CureDuchenne. This upcoming initiative features a clever fox wearing a detective hat, riding in a player’s personalized backpack. Fittingly, the WoW artist who crafted these features is also a Norwegian named Mats. The fundraising campaign will continue until January 7, 10 a.m. PST.

Earlier this year, a documentary titled “The Remarkable Life of Ibelin” premiered at the Sundance Film Festival, capturing audiences with Mats’s compelling story. Its narrative didn’t just stay digital; it resonated widely, leading to both Directing and Audience awards in the World Cinema/Documentary category, followed by a Netflix deal just in time for Mats’s 10th death anniversary. It has even made it to the shortlist for the 97th Academy Awards.

Norway has immortalized Mats’s contributions by creating the Ibelin Award, set to be awarded annually from 2025 onwards to gamers who exemplify moral leadership and community care.

Mats’s secret life as a dedicated private investigator may have been revealed in WoW, but it remained largely unknown to those at home. Robert Steen, Mats’s father, admits they underestimated the impact of digital gaming as a platform for social interaction. Together with their daughter Mia, the Steens fit the classic parent profile from the ’60s—skeptical of screen time. They were clueless about the friendships their son nurtured and the support he gave to others online.

One of Mats’s online confidantes was Lisette, also known as Rumour, prominently featured in the documentary. Her own rocky journey included a deep depression triggered when her parents took away her computer, unknowing they were severing her from crucial friendships. Mats wrote directly to her family, emphasizing how real these gaming interactions and communities were. He rarely met in person with his virtual friends and never participated in voice chats, revealing his condition through a blog post instead. His parents later used this blog to announce his passing to Mats’s online counterparts.

Kai Simon Fredriksen from Oslo connected with Mats through the Starlight Guild in WoW, calling it “the emotional heart of the guild.” To Fredriksen, it’s the sense of community that keeps World of Warcraft endlessly engaging. Guilds like Starlight are more than just game strategies; they foster lasting connections. Mats applied to join the guild when he was 16, his character Ibelin becoming a vibrant part of the community. Fredriksen fondly remembers Mats’s thoughtful nature, noting his insightful questions and eagerness to listen.

“The Remarkable Life of Ibelin” brings these virtual interactions to life using animations, family videos, and logs from Starlight, narrating Mats’s impactful journey in WoW.

Fredriksen learned of Mats’s condition only towards the end of his friend’s life. After Mats died, the guild raised funds to attend his funeral and honor his memory through an annual in-game run, following Ibelin’s old paths, with increased participation following the documentary’s release. This commemoration draws WoW community veterans like Fredriksen and brings together his parents, Trude and Robert, via their dwarf avatar.

Through Mats’s story, the Steens gained a profound insight into gaming’s potential to enrich lives and form communities. They wish to share this understanding with other parents. Robert reflects on the gap between what they knew about Mats and the vibrant life he led online, urging parents to engage more openly with their children’s digital worlds.

Hawken Miller, a fellow gaming enthusiast with Duchenne like Mats, appreciates how the documentary opened his own mother’s eyes to the deeper layers of gaming. He confirms that gaming is as much about the social connections as it is about the gameplay itself.

Debra Miller, Hawken’s mother, confesses that until recently, she misunderstood gaming’s significance, seeing it as a hindrance rather than helpful. Yet after engaging with Mats’s story, she now appreciates the friendships and emotional support systems it fosters.

Debra, who founded CureDuchenne after her son’s diagnosis, is optimistic about future treatments offering extended lifespans for those with the condition. The organization’s work over two decades has driven promising research and support for affected families, proving that every generation benefits from the breakthroughs of the last.

Mats’s legacy extended further than imagined, as shown by the enduring relationships he built. Blizzard was inspired to fully support his story once they learned of the film’s development, realizing the true emotional power of such experiences.

Holly Longdale, a veteran in the gaming world and World of Warcraft’s executive producer, emphasizes the genuine connections made through MMOs like WoW. She sees gaming as a life-changing space that profoundly affects players beyond mere entertainment.

Mats’s story and the ongoing WoW Reven Pack tribute exemplify that powerful blend of fantasy and reality in roleplaying games, where the bonds are genuine, and the communities are vibrant with life.

Support CureDuchenne by purchasing the Reven Pack by Jan. 7, 10 a.m. PST, and join a cause that reaches far beyond the virtual to touch lives around the world.