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

From a young age, Mats Steen was enchanted by a tiny ceramic fox—a “reven” in his home country of Norway. His mother, Trude, fondly recalls how he never parted from it, not even in the days when he could still stroll around on his own two feet.

Life shifted when Mats was 7, and a wheelchair made its appearance at his doorstep. The family had braced themselves for the day he’d require it due to the muscle-weakening grip of Duchenne muscular dystrophy. Mats was not fond of that wheelchair and for a time, it simply stood in the hallway as he stubbornly continued without it, even as his strength waned and falls became more frequent. Ultimately, though, the wheelchair became indispensable.

Years passed and as Mats grew older, a new fox joined his life, this one a miniature replica that graced his living room shelf—a daily reminder of his affection. At age 25, Mats passed away in 2014, leaving behind his family who honored his memory with a gravestone carved with his cherished fox.

In the virtual realm of World of Warcraft (WoW), a massively multiplayer online game that enriched the last eight years of Mats’s life, a monument stands tall in his name. Yet, it’s only after his departure from the physical world that Mats’s parents realized the profound impact he had made within his virtual community.

In WoW, Mats shed his earthly restraints, embodying a character known as Ibelin—a captivating private investigator endowed with strength and charm, complete with long red hair and an infectious smile. He became a beloved figure in the game, his gentle spirit resonating with countless players.

Unbeknownst to many, Mats’s gaming persona had touched lives in ways his parents had never imagined. The developers of WoW honored him with an in-game initiative, the Reven Pack, featuring a cunning fox sporting a detective hat. This wasn’t just a tribute; it also supported CureDuchenne, an organization dedicated to fighting the disease that Mats battled. The endeavor unfolded with a touch of serendipity, as the artist responsible for this tribute shares not only Mats’s Norwegian roots, but also his name.

Earlier this year, “The Remarkable Life of Ibelin” premiered at the 2024 Sundance Film Festival, earning accolades and hearts alike with Mats’s enduring legacy, a story that expands well beyond the pixels. Inspired by a 2019 BBC article, Norwegian filmmaker Benjamin Ree embarked on a journey to tell Mats’s story, delving into memories from family and friends to weave this narrative.

The documentary did more than paint a picture in festivals—it found a home on Netflix, debuting in perfect synchrony with the tenth anniversary of Mats’s passing. Its reception was profound, its candid portrayal securing nominations and even a potential spot at the 97th Academy Awards in 2025.

In homage to Mats, his homeland has inaugurated the Ibelin Award, to be bestowed annually starting in 2025 upon a gamer who embodies the selfless spirit Mats was known for, one who fosters community and care.

Mats’s influence went beyond physical interactions. He cultivated a world of camaraderie, a private digital sphere that his parents only discovered after his passing. His father, Robert Steen, reflects on how their understanding of gaming has matured posthumously. Previously embodying the typical oversight of parents who grew up in the 60s, they missed seeing how gaming had become a landscape where Mats strove and shone.

While they had monitored the screen time in their family, the Steens never truly grasped the depth of Mats’s engagements—the friendships he formed, the support he rendered. His father describes an instance where Mats guided a guild member, Lisette, through a rocky period after her own parents took away her connection to her online friends. Mats’s letters opened paths, explaining the realness of these online worlds and the genuine relationships within them.

Through guilds like the Starlight Guild, Mats—through his Ibelin character—unlocked social experiences many didn’t know existed within such games. Mats joined this group, becoming a vibrant participant and an emotional anchor for the guild, showing a level of empathy and thoughtful engagement that rarely goes unnoticed.

Fredriksen, one of the guild members, recollects Mats as someone who always took the time to listen and offer advice in times of need. These actions, rekindled with fresh animation and archival media, are vividly depicted in the documentary.

The profound bonds Mats formed within WoW were so tangible that after his passing, the guild collectively journeyed to attend his funeral, showing the strength of connections forged across virtual landscapes. Every year, Mats’s guild runs the in-game path Ibelin logged countless times, a heartfelt memorial tradition significantly bolstered by his story’s exposure via Netflix.

All these experiences lead to a broader understanding for the Steens, who now devote themselves to enlightening other parents about the opportunities for connection and growth gaming can provide. As Robert Steen puts it, truly grasping the digital universe where children dwell can be a powerful tool for guidance.

Hawken Miller, a fellow gamer with Duchenne, finds echoes of his own life in Mats’s story. Gaming has provided social arenas for people like Hawken, especially during demanding times. The steadfast bonds established in these virtual realms carry through despite their seemingly recreational facade.

Blizzard, realizing the depth of this narrative, supported the documentary wholeheartedly, recognizing moments where entertainment transcends into touching lives. Holly Longdale, a prominent figure within Blizzard, sees in gaming a universe of potential—a sentiment underlined by stories like Mats’s, where a game isn’t just a pastime but a canvas for life’s engagement.

Mats’s legacy reminds us that games are not mere pastimes—they’re spaces where lives are woven into enduring narratives and friendships, showcasing precisely how connections are not limited by the physical boundaries or agreements of traditional relationships. They are the spaces that Mats, with all his boundless spirit, navigated, leaving an indelible mark on not just those he knew but a global community now touched by his journey.