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They thought their son lived an isolated life. But when he died, friends showed up in droves.

Mats Steen's parents were shocked to learn their severely disabled son had lived a rich, independent life they knew nothing about.

Netflix/YouTube

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.

- YouTubeyoutu.be

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 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 (DMD), 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, partnered with video game company Blizzard Entertainment's World of Warcraft in Mats' honor from the end of 2024 until January 7, 2025. During that window, World of Warcraft players could 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.”

In February 2025, CureDuchenne announced that The Reven Pack raised over two million dollars in support. Later in the month, Debra and Hawken Miller of Cure Duchenne spoke with ViceVice and shared how The Reven Pack helped raise valuable awareness about Duchenne in addition to funds. For those interested in updates, the site keeps donors and supporters current on all developments in Duchenne research news.

Mats life was truly impactful in many ways and to many people. His love, kindness, and friendship touched lives and his legacy continues to help those struggling with this rare disease. According to the site, since the inception of CureDuchenne, life expectancy for those with the disease has increased by a decade and over fifty million dollars have been raised for research, education, and care.

You can learn more about Mats' story in the award-winning documentary, The Remarkable Life of Ibelin on Netflix.

This article originally appeared last year. It has been updated.

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Joy

They thought their son lived an isolated life. But when he died, friends showed up in droves.

Mats Steen's parents were shocked to learn their severely disabled son had lived a rich, independent life they knew nothing about.

Netflix/YouTube

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.


This article originally appeared last year.

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Equality

Wil Wheaton's locker room story shows exactly why homophobic jokes are a problem

One of the great rules of comedy is punch up, not down.

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Wil Wheaton | Wil Wheaton speaking at the 2018 Phoenix Comic… | Flickr

Comedy can be uplifting. And it can also be downright destructive. The rise of cancel culture has made us take a hard look at what we normalize for the sake of a good joke. And with Dave Chappelle’s controversial comedy special, that includes jokes which can be perceived as cruel or homophobic jabs by the LGBTQ community and allies.

At the same time, comedy is supposed to be disruptive, is it not? It’s meant to be audacious, bawdy, outrageous. And let’s not forget it’s often said sarcastically, meaning we don’t really believe what what's being said … right?

Wil Wheaton has previously given a brilliant take on how to separate the art from the artist. This time though, he’s confronting the art itself and what makes it problematic.

“For anyone who genuinely doesn't understand why I feel as strongly as I do about people like Chappelle making transphobic comments that are passed off as jokes, I want to share a story that I hope will help you understand, and contextualize my reaction to his behavior."

Wheaton started off his story by sharing how he used to play ice hockey when he was 16, and one night enjoyed a warm welcome as a guest goalie. After a fun practice, Wheaton joined his teammates in the locker room.

“Before I tell you what happened next, I want to talk specifically about comedy and how much I loved it when I was growing up… One of the definitive comedy specials for me and my friends was Eddie Murphy's Delirious, from 1983. It had bits that still kill me… Really funny stuff.

There is also extensive homophobic material that is just…appalling and inexcusable. Long stretches are devoted to mocking gay people, using the slur that starts with F over and over and over. Young Wil, who watched this with his suburban white upper middle class friends, in his privileged bubble, thought it was the funniest, edgiest, dirtiest thing he'd ever heard… And all of it was dehumanizing to gay men… I didn't know any better. I accepted the framing, I developed a view of gay men as predatory, somehow less than straight men, absolutely worthy of mockery and contempt. Always good for a joke…

Wil Wheaton | Wil Wheaton at the Phoenix Comicon, on the Eur… | Flickrwww.flickr.com

…A comedian who I thought was one of the funniest people on the planet totally normalized making a mockery of gay people, and because I was a privileged white kid, raised by privileged white parents, there was nobody around me to challenge that perception. For much of my teen years, I was embarrassingly homophobic, and it all started with that comedy special.”

Here Wheaton pivots back to the locker room:

“So I'm talking with these guys…We're doing that sports thing where you talk about the great plays, and feel like you're part of something special.

And then, without even realizing what I was doing, that awful word came out of my mouth. ‘Blah blah blah F****t,’ I said.

The room fell silent and that's when I realized every single guy in this room was gay. They were from a team called The Blades (amazing) and I had just ... really fucked up.

"'Do you have any gay friends?" One of them asked me, gently.

"Yes," I said, defensively. Then, I lied, "they say that all the time." I was so embarrassed and horrified. I realized I had basically said the N word, in context, and I didn't know what to do. I wanted to disappear. I wanted to apologize, I wanted to beg forgiveness. But I was a stupid sixteen year-old with pride and ignorance and fear all over myself, so I lied to try and get out of it.

"They must not love themselves very much," he said, with quiet disappointment.

Nobody said another word to me. I felt terrible. I shoved my gear into my bag and left as quickly as I could.”

“That happened over 30 years ago, and I think about it all the time. I'm mortified and embarrassed and so regretful that I said such a hurtful thing. I said it out of ignorance, but I still said it, and I said it because I believed these men, who were so cool and kind and just like all the other men I played with (I was always the youngest player on the ice) were somehow less than ... I guess everyone. Because that had been normalized for me by culture and comedy.

A *huge* part of that normalization was through entertainment that dehumanized gay men in the service of "jokes". And as someone who thought jokes were great, I accepted it. I mean, nobody was making fun of *ME* that way…so…

This stuff that Chappelle did? …For a transgender person, those "jokes" normalize hateful, ignorant, bigoted behavior towards them. Those "jokes" contribute to a world where transgender people are constantly under threat of violence, because transgender people have been safely, acceptably, dehumanized. And it's all okay, because they were dehumanized by a Black man……Literally every queer person I know (and I know a LOT) is hurt by Chappelle's actions. When literally every queer person I know says "this is hurtful to me", I'm going to listen to them and support them, and not tell them why they are wrong…”

Wil Wheaton brings up some powerful points. While this is a complex issue, the insidious nature of dehumanizing jokes is pretty blatant. At some point we have to ask ourselves: Is it really worth harming someone else for the sake of a joke? When put that bluntly, the answer, I hope, is a resounding no.


This article originally appeared four years ago.

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Pop Culture

Man's epic rant about streaming services is so relatable people are applauding

"Everything was faster and easier and worked better 20 years ago and we ruined it. We were all scammed."

Representative Photo credit: Canva

Man's epic rant about streaming platforms has people applauding.

Something happened nearly two decades ago. There was a shift where video rental stores were shutting down because Netflix (who used to deliver literal DVDs) and Redbox were causing a significant decline in customers. Then Netflix became a streaming service, making it even easier for you to get access to the movies you would normally rent for a flat fee and reducing the stress of losing or damaging a DVD.

This jump into streaming created the demand for more streaming services at a time when cable rates were skyrocketing. It made practical financial sense to move over to a couple of streaming services and let go of cable. That is until the streaming services became obnoxiously plentiful.

Anthony Robustiano recently went on an epic rant about his frustration with streaming services after he tried to find a movie to watch. He explains that in order to even know which streaming platform to watch the movie on he first had to Google the movie. That's when the rant turns up a notch.

"To then finally finding the movie on a streaming service that you own and you get excited and you go to the movie and then Prime Video is like, 'well we're going to need an additional $3.99 from you.' Why? I'm already paying you a monthly fee what are you talking about? And they're like 'well you can rent it or buy it for seven grand.'"

You know someone's a peak frustration when they're making up ridiculous numbers to express how expensive something is. But Rubstiano wasn't alone in his irritation with the high price of multiple streaming platforms. Commenters joined in and agreed that maybe cable was actually superior to streaming services after all.



"Also? The entire appeal of Netflix was ‘no ads.’ As a single person I relented and subscribed to Netflix sometime after COVID screwed the world, when tired of having to put up with ads while watching ‘free’ movies on cable or YouTube or a few other free show sources online. Now, they want me to choose between paying a lot more, which I cannot do, or…. Putting up with ADS. Good-bye, Netflix," one person writes.

"THIS!!!! It’s awful. There’s nothing to watch. Mostly because I can’t find it and get overwhelmed," another says.

"Everything was faster and easier and worked better 20 years ago and we ruined it. We were all scammed," someone complains.

"ALL WE EVER WANTED WAS CAFETERIA STYLE CABLE. Let us pick what we're paying $70/mo for. GOSH," another person shouts.

The consensus seems to be that since the streaming services now all come with ads and additional fees, bringing back Blockbuster or cable would be preferable. Although some people shared that they kept their old DVD/Blu Ray players so they could physically own a copy of what they purchased, pointing out that when a streaming platform loses rights to a movie or show, you no longer have access even though you may have purchased it.

In a perfect world, a cable company could strike a deal with the streaming services giving you access to all of the platforms for one price along with basic cable. Until then, stores still sell DVD players.

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