I recently had the opportunity to attend a roundtable discussion around The Remarkable Life of Ibelin, hosted by the charity Muscular Dystrophy UK. In case you're unfamiliar, the documentary centers around WoW player Mats Steen, who died in 2014 due to Duchenne muscular dystrophy, a muscle wasting condition with a life expectancy of around 20 to 30 years.
It's an emotional journey to watch, to be sure, but I was also deeply impacted by the speakers at the roundtable itself, all of which found a deep connection to the story and the way it was told. I had a follow-up chat with Martin Hywood of Muscular Dystrophy UK, who was diagnosed with limb-Girdle muscular dystrophy in 1996, and has raised a staggering £300,000 for research into conditions like his over the course of his life.
"I was diagnosed over 25 years ago, and I was fed up, I was so angry, and I was like, in a position of: 'Why me, why has this happened to me?' I wanted to be a car mechanic. I left school at 15. I went back for my exams, but that was that … I was told to sort of give up the career, because after going from pillar to post with about four different hospitals, I eventually got this diagnosis.
"I was all fed up," Hywood explains. "I didn't want to know anybody living with muscular dystrophy. I didn't want a charity or anything to do with it. But I knew I needed to change my whole career." What follows is a pretty staggering set of jobs—Hywood went on to work for Volkswagen, became an administrator at an IT company he later bought, had a stint in pharma, and more.
"My wife was noticing children getting diagnosed, which was devastating … so we started fundraising. I was so lucky. It was like the Midas touch. Everywhere I went and spoke about it. People would get in touch, like the Kaiser Chiefs and Jon Richardson from 8 out of 10 cats … All these people just started getting in touch and said, 'How can I help?' … So, yeah, so that's all these little events we put on. Accumulated to £300,000 so far."
As for what he's doing now, Muscular Dystrophy UK has a current charity drive called Game On, a system where gamers of any stripe can start up a digital fundraiser to help out. Hywood, who uses a wheelchair due to his condition, tells me it was born out of a desire to provide fundraising activities that anyone could take part in.
"We find people with disabilities are extremely talented at gaming," Hywood says, who's a dab hand himself, telling me he tremendously impressed his nephew when he hit #16 on the Forza Horizon 4 leaderboards: "It's something they do quite well as a pastime. So we came up with the idea of gamers being sponsored for a marathon event, whether that be six or 12 or 24 hours."
"I found that sometimes, I have people taking part in events for me, but I can't be there physically. They might be doing a marathon in Scotland, so I can't be at that. But with Game On, people can actually go to the event."
Just as Steen (known in-game to his friends as Ibelin) had a huge impact on his community, it feels like a natural progression, to me, for people with these conditions to continue using videogames as a force for good. Hywood (who insists he doesn't want to "blow his own trumpet") says that Mats' ability to touch the lives of others made a lasting impression on him and his own work.
"I thought to myself—a lot of people have told me that £300,000 is an incredible amount of money to raise for a charity, and it's starting to hit home that it is, and that it's a fantastic achievement … And yet I still come away from the film thinking 'I must be able to do more to help more people, I must be able to raise more awareness, there must be something else that I can do to raise more funds'."
I can raise 300,000 pounds and go on to raise a million pounds or whatever, but what Mats did with that relationship is utterly priceless."
Martin Hywood
Hywood mentions a moment from the film, where Steen encourages a mother to connect with her autistic son by playing WoW with him—encouraging him to connect to not only her, but the outside world. "I don't think you can put a price on what Mats did when he helped that mother and son relationship have that hug … that is priceless compared to anything I did. And I think that's where I get that feeling of I need to do more. I need to do more than just monetary things.
"I can raise 300,000 pounds and go on to raise a million pounds or whatever, but what Mats did with that relationship is utterly priceless."
As for what Hywood hopes audiences will take away from the documentary? "I hope that people will watch The Remarkable Life of Ibelin and drill down, go down the rabbit hole of not just who Mats was, but also the condition, and find out more about Muscular Dystrophy UK, and hopefully reach out to support us, or receive help.
"Even if they're not donating or getting involved, they'll be more aware of muscle wasting and weakening conditions, because they're extremely rare," (for context, around 110,000 people in the UK have muscle wasting and weakening conditions). "And when something's extremely rare, it doesn't get much attention. What [the director] Benjamin has done, is he's really brought this amazing story to the fore, but also these extremely rare conditions. So in my eyes, that's absolutely amazing." If you're interested in hosting an event or streaming marathon to help people like Ibelin in the UK, you can sign up for Game On here.
