Mats Steen lived a secret life that his family only discovered after he died.
Mats Steen was only 25 years old when he passed away, his body succumbing to the genetic disease that had slowly taken his mobility since childhood. He'd lived in a wheelchair since his early teens, and by his 20s, his physical abilities had deteriorated to the point of only being able to move his fingers. He could push buttons and use a mouse, and he spent nearly all of his waking hours playing video games in his parents' basement.
His family loved him and cared for him through it all, giving him as much of a normal life as they could. But they also lamented everything they knew he'd missed out on. "Our deepest sorrow lay in the fact that he would never experience friendships, love, or to make a difference in people's lives," Mats' father shares.
Mats left behind the password to a blog he kept. Not knowing if anyone would actually read it, his parents published the news of Mats' passing in a blog post, adding their email address in case anyone wanted to reach out.
Much to their surprise, messages began pouring in from around the world—not just with condolences, but with heartfelt stories from people who called Mats their friend.
The Steens soon discovered that their son had lived a much fuller life than they'd ever imagined—one that included all the things they always wished for him.
As his online life was revealed, the family learned that Mats began his days with a routine 30-minute sprint through the forest. He frequented cafes and pubs, chatting with strangers and flirting with women. He sat by campfires having heart-to-heart conversations. He made friends and enemies. He fought heroic battles. He supported people in times of need. He gave advice that people took. He experienced his first kiss.
And he did it all as "Ibelin," his handsome, muscular avatar in the online game World of Warcraft.
- YouTubewww.youtube.com
Mats' life is showcased in the documentary, "The Remarkable Life of Ibelin," in which his parents share the story of how they discovered their son's group of friends they didn't know he had.
People who've never played an open world roleplay game like World of Warcraft may wonder how real community can be built through it, but Mats' story proves it's possible. The friends he made through the game have shared the real influence he'd had on their real lives, from helping them with problems they were facing to empowering them to make positive changes in their relationships.
Though he never met them face-to-face, Mats' online friends say he made a significant impact on them.
A young woman Ibelin had connected with as a teenager—the one with whom he'd shared that first virtual kiss—shared that her parents had taken away her computer when they feared gaming was interfering with her studies. When she logged on at a local library, Mats gave her a letter he had written to give to her parents, encouraging them to talk with her about her gaming hobby and to work out a solution together that didn't require her to give it up completely. She printed it and gave it to them. Miraculously, it worked.
Another woman had been having a hard time connecting with her autistic son as a young adult. When she talked with Ibelin about her struggles, he suggested that she and her son start gaming together and connect in that way first. Eventually, that connection via the virtual world led to warmer in-person interactions between them—and a life-changing shift in their relationship.
"I don't think he was aware of the impact that he had done to a lot of people," the mother shared.
Mats interacted with the same online friends as Ibelin for years, going through the kinds of ups and downs all real friendships experience. He kept his physical condition a secret until close to the end of his life, when he finally opened up to another player who convinced him to share his reality with the others. Some traveled from other countries to attend his funeral, with one of them speaking on the group's behalf and a few of them serving as pallbearers. Those who knew Ibelin also held a memorial in-game at his virtual gravesite—a tradition that has spread beyond just his own guild.
Typically, we think of someone escaping the real world and spending hours a day playing video games as unhealthy, but for Mats, it was a lifeline. As Ibelin, Mats was able to have a level of independence and a rich social life that simply wasn't possible for him in the offline world—an uniquely modern phenomenon that technology and human creativity have made possible.
Mats' impact on his online community was real, and 10 years after his passing his impact is spreading even further.
Duchenne muscular dystrophy, the genetic disease that Mats lived with and ultimately died from, affects 300,000 boys worldwide. It only affects males and it has no cure. But CureDuchenne, a global nonprofit dedicated to funding and finding a cure, has partnered with Blizzard and World of Warcraft in Mats' honor. From now until January 7, 2025, World of Warcraft players can purchase a limited-edition pet fox named Reven ("fox" in Norwegian). The Reven Pack, which includes a transmog backpack and Reven’s Comfy Carrier, costs $20, with 100% of the purchase price being donated to CureDuchenne.
The Reven Pack on World of Warcraft—100% of purchase cost goes to the CureDuchenne foundation.World of Warcraft/CureDuchenne
“Mats Steen lived a life in World of Warcraft that he couldn’t in the real world as he fought Duchenne muscular dystrophy alongside his incredible family, who I’m proud to have met and fallen in love with,”said Holly Longdale, executive producer of World of Warcraft. “Working with CureDuchenne for our Charity Pet Program, in honor of Mats’ memory, allows us to harness the power of our phenomenal global community to bring meaningful impact to so many lives.”
You can learn more about Mats' story in the award-winning documentary, "The Remarkable Life of Ibelin," on Netflix and learn more about the CureDuchenne fundraising initiative with World of Warcraft here.