When Robert Steen casually thinks back to the summer of 1989, the headlines of that year come to mind: China’s Tianenmen Square massacre, the fall of the Berlin Wall and Pope John Paul II’s visit to Steen’s native Oslo, Norway.
“But what I remember most was the kind of sunny, warm summers we dream about,” he said. “I had met my wife, Trude, the year before. We were both in our 20s, and I worked as an economic advisor at a construction company. We said hi and started to talk, and that’s how it all began — two young people at a Xerox machine.”
The courtship led to marriage, and eventually the birth of a son, Mats, that summer. Only 15 months later, they had a daughter, Mia. Yet it was only when Mia started to walk that the Steens noticed the stark difference between their babies; Mia was hitting milestones — crawling, walking and running — way before her older brother.
“She was the active one, while Mats was sitting in the sandbox, not playing,” he said. “We addressed this with healthcare providers in Norway, but they said that we were just too worried, that everything would work out. It didn’t.”
At 1 p.m. on May 18, 1993, said Robert, he and his wife learned that Mats had Duchenne muscular dystrophy (DMD).
“We were told these five words: ‘There is no curative treatment.’ At this exact moment, our small dream world fell apart,” he said. “Our fear was that Mats would be isolated and live a life without friends, without the experience of falling in love or leaving footprints in other people’s lives.”
How wrong that turned out to be.
His parents didn’t know it at the time, but Mats, who died on November 18, 2014, at the age of 25, touched countless others through his fascination with World of Warcraft, a multiplayer video game developed by Blizzard Entertainment.
Mats and his online persona, Ibelin, inspired a Netflix documentary about his short life, “The Remarkable Life of Ibelin“, as well as a charity partnership with the nonprofit organization CureDuchenne that has so far raised over $2 million toward DMD research.
“Life is truly a rollercoaster, both emotionally and practically,” Steen told Rare Disease Advisor (sister brand to DMD Companion). “It’s hard to understand the challenges of Duchenne families unless you’ve been there yourself.”
In an interview at the recent 2025 CureDuchenne Futures Conference in San Antonio, Texas, Steen said he and his wife devoted four and a half years to producing the Netflix documentary.
“When you create a movie, people watch it and go on with their lives. But once in a blue moon, you experience a great movie,” he said, adding that it was crucial to tell his son’s story with honesty. “Mats was never bitter. We never understood why he was so positive, full of optimism and curious given his condition. And today, we understand why.”
The 104-minute production, directed by Benjamin Ree, premiered in January 2024 at the Sundance Film Festival in Park City, Utah, where it won two awards in the World Documentary Competition. Earlier this year, it also won a Peabody Award at the 85th annual ceremony in Los Angeles. Review aggregator website Rotten Tomatoes has given it a score of 97%.
After Netflix began streaming the movie last October, the Steens received thousands of messages from people around the world about how Mats had touched their hearts.
“What we saw was a boy with a severe illness in a wheelchair in front of a screen. As far as society was concerned, these kids were gaming and wasting time, when in fact, he wasn’t wasting his time,” Steen said. “This was his portal to be whoever he wanted to be. This was his sanctuary, where his chains were broken.”
Steen said his son spent 10 years in this roleplaying world, which he calculates to be more than 20,000 hours of screen time.
“There, he had social interactions. He had love affairs. He had the feeling of being important for other people,” Steen said. “He helped more or less 50 people when they were in dark moments in their lives. But at the time, we had no idea — and we were sad that we couldn’t provide anything else for him.”
When Mats got his DMD diagnosis, Oslo was home to only 13 other boys with Duchenne.
“The community was extremely small in 1993. We didn’t have internet or any way of communicating with other Duchenne boys,” Steen said. “We tried to send emails to people working in hospitals. Sometimes we got an answer; sometimes we didn’t. All in all, we felt fairly alone. We didn’t have an organization like CureDuchenne.”
Mats never received any treatment or medication for his Duchenne because none were available during his lifetime. Nor did he get steroids.
“Science hadn’t come as far as it has today, so it was more about physical training and keeping his muscles flexible,” Steen said. “In the end, Mats was not able to move anything else than his fingers. But thanks to special equipment for his computer, he could communicate. He could help. He could participate. He could be an active part in social relationships through his Ibelin avatar in this online gaming world.”
Learn more about DMD treatment and care
Through an arrangement with Blizzard Entertainment, World of Warcraft players had the chance to build on Mats’ legacy and adopt a limited-edition pet fox, named Reven (“fox” in Norwegian), in World of Warcraft to accompany them on their adventures while supporting CureDuchenne.
The reason: Ibelin, the avatar that Mats created, had red hair and a ponytail. He worked as a daytime private investigator in the roleplaying game, so his friends nicknamed him “the fox.” This pet fox — sporting a Sherlock Holmes hat — could be purchased for $20 for a three-month period; some 100,000 World of Warcraft players did so.
The $2 million generated as a result is the largest corporate contribution the organization has ever received.
“This campaign has been truly extraordinary — not only in the critical funds raised for research, but in the awareness it has generated for Duchenne muscular dystrophy,” Debra Miller, founder and CEO of CureDuchenne, said in a recent press release. “The World of Warcraft community has shown that gaming can be a powerful force for good.”
Sign up here to get the latest news, perspectives, and information about DMD sent directly to your inbox. Registration is free and only takes a minute.
