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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.

From Your Site Articles
Health

Bus seat shaped like a man's lap was installed to make a point about sexual harassment.

Obviously, it wasn't the most comfortable — or preferred — seat on the train for riders.

Photo pulled from YouTube video

Mexico City installs attention grabbing, anatomically correct seat.

Anyone using the Mexico City Metro recently may have spotted an ... odd seat on the train, a seat quite unlike the rest.

Instead of a back, the seat's plastic was molded into a person's protruding torso. And instead of a flat bottom for sitting, the seat took on the form of that person's thighs and penis.

Obviously, it wasn't the most comfortable — or preferred — seat on the train for riders.

Above the seat was a sign declaring the seat "for men only."

Another sign on the floor, legible once a person was sitting in the chair, reads (translated from Spanish): “It’s annoying to sit here, but doesn’t compare to the sexual violence women suffer on their daily trips."

Watch a video of confused, amused, and offended passengers experiencing the seat below:

The campaign, #NoEsDeHombres, was launched by U.N. Women and authorities in Mexico City to educate men on the seriousness of sexual assault on public transit.

Mexico's capital has a bad reputation when it comes to women's safety, the BBC reported. A global 2014 study found Mexico City was the worst in the world in terms of verbal and physical harassment experienced on public transit.

But harassment is a problem on virtually every major city transit system — including in the U.S. Last year, a survey of Washington, D.C., transit riders found 1 in 5 users had experienced sexual harassment during their commutes, with 28% of that figure reporting having been inappropriately touched or assaulted. As you could have guessed, women were nearly three times as likely as men to experience harassment, the survey found.

Maybe a seat like this for men should be on every city train from here on out.


This article originally appeared on 03.31.17


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video
Family

How big data revealed a powerful forgotten ally in the fight against Zika.

In 2015, the Zika virus cropped up in Latin America. In doing so, it planted itself firmly in our worry-filled human minds, too.

Photo from Luis Robayo/AFP/Getty Images.

Zika is a mosquito-borne virus that can make people very sick. It causes a variety of problems, including birth defects in unborn children.

In February 2016, the Brazilian chapter of UNICEF (the United Nations program aimed at supporting women and children in the developing world) wanted to help educate people about the disease. So they started to develop an awareness campaign.

The right message to the right people can save lives — but how do you make sure your message is right?

In most stories, this would be the place where the organization comes up with a game plan, runs it through a focus group, hires some graphic designers or copywriters, then distributes the new message. Maybe afterward, they'd do an analysis to see if they aimed right.

But in this case, that's not what UNICEF did. They suspected there might be a better way.

Before they even started on the campaign, UNICEF teamed up with Facebook to figure out who their audience for Zika actually was.

“In order to address a problem, you have to understand how the public is thinking about it," says Molly Jackman, a research manager at Facebook.

UNICEF ended up working with Facebook and another partner, ActionSprout. They pulled a bunch of anonymous, aggregated data from Brazilian Facebook, trying to find out what the public really was saying about the virus.

They ended up finding some surprising information.

One of the big secret success factors to Zika awareness? Men.

A doctor told this dad his child might be in danger because of Zika. Photo by Diego Herculano/NurPhoto.

Conventional thinking was that because everyone was talking about Zika's dangers to pregnant women, any messages about health and safety should be targeted at women. Seems obvious, yeah? But it turned out men weren't exactly being silent about it.

In fact, men were responsible for the majority of posts about Zika. Moms weren't the only ones worried about Zika's potential effect on babies. Dads were too.

UNICEF realized it had accidentally ignored this huge group of people in its messaging. So it created a post specifically aimed at engaging the dads of Brazil in fighting Zika.

Este pai quer ajudar outras famílias a conviver com a microcefalia.Quando soube que a esposa estava grávida, Felipe se...

Posted by UNICEF Brasil on Friday, 29 April 2016

Based on the Facebook analysis, UNICEF was also able to hit a couple of other areas, like preemptively reinforcing that Zika wasn't a laughing matter. They also created Q&A sessions with experts and expanded their education to other mosquito-based disease.

All this work paid off. An after-the-fact analysis showed that people who got this info were not only more engaged, aware, and more likely to take action to prevent the spread of the disease, but their results beat out a traditional campaign.

Social media is a tool that can be used for good, and this story shows that.

Like all tools, we should be mindful of how we use it, of course. But the right tool in the right hands can make a huge difference.

“Trends in the public conversation are vitally important to health organizations," says Jackman. "That information can save lives.”

The internet is a big, weird place. But it's pretty cool that in this case, we harnessed it for good.

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This 'Stranger Things' star is one in a million. So is his genetic disorder.

The Netflix retro sci-fi hit "Stranger Things" brought a lot of wonderful things into our lives — including the phrase "cleidocranial dysplasia."

When I watched the show, I just assumed that Dustin's oft-repeated comeback about his "cleidocranial dysplasia" was a just fancy scientific way of saying "late tooth development" or something.

All GIFs from "Stranger Things."

But turns out, it's actually an incredibly rare congenital disorder that affects one in a million people. Symptoms can include underdeveloped bones and joints, absent collarbones, shortened limbs, skull deformities, and, yes, dental abnormalities like adult teeth that fail to come in when they're supposed to.

Which is really all just a fancy scientific way of saying that Dustin is awesome.

That might seem like a deep-cut from a totally random medical text. But there's a good reason it was mentioned in the show.

Gaten Matarazzo, who played Dustin on the show, has cleidocranial dysplasia in real life.

While his is a more mild case — he really is missing some teeth, which makes him speak with a lisp, and he's missing his collar bones, which means he can do some crazy things with his shoulders — that doesn't mean that his life has been easy.

The 14-year-old has had to endure several surgeries, and it's also made it harder for him to find work as an actor.

"It was always because of my lisp, and me being shorter and having the teeth issue, that was always the reason they couldn’t cast me,” he explained in an interview with BBC Radio.

"They couldn’t write in a disability into the show because they had already written the script."

That made it all-the-more powerful when the Duffer Brothers, who created "Stranger Things," not only cast Matarazzo in the show, but also embraced his condition and made it a part of the character. (Of course, that wasn't the only part of his character that the writers embraced...)

Matarazzo is using his newfound fame to raise awareness about this rare condition too.

He's opened up to People magazine and the BBC, spreading knowledge about the condition far and wide.

"I just want to raise awareness for it and let people know that it's not something they should be afraid of showing," he told the British talk show host Jonathan Ross.

That sudden limelight has also had a tangible impact on people like Matarazzo. "It really helps them come out of their shells a little bit. Because a lot of people have it much worse than I do and it affects them much worse than it does me," he told the Daily Beast. "Because this was in the show and this is the first time they’ve heard of it outside the doctor’s office, it made them feel really good and it inspired them."

Despite the setbacks that he's faced in the past, Matarazzo's success today is a moving reminder that representation for folks with disabilities is important.

In addition to "Stranger Things," he's even appeared on Broadway several times, and let me tell you: This 14-year-old kid with missing teeth, and a lisp, can belt out show tunes like there's no tomorrow.

There was a time not too long ago when all this would have been impossible. But thanks to people like Gaten Matarazzo, representation is making the world brighter — and fairer — every day.

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