As a child, Megan Shaw was always falling. She bruised easily, seemed to be accident-prone and fainted a lot. As a teenager, she found out she had Ehlers-Danlos syndrome, a rare genetic condition that affects connective tissue. But at 23, she focuses on what she can do, not what she can’t.
A native of Scotland, she loves “wild” (in other words non-pool) swimming in nearby lakes (including Loch Ness) with friends and family. In the winter, she uses a wetsuit, but she doesn’t need to wear braces or tape in the cold water, which soothes her joints. Mountain hikes are also part of her routine – though her backpack comes with a feeding tube. She’s also six months out of medical school, doing a vascular surgery rotation as a junior doctor (the equivalent of a medical residency program in the U.S.). She intends to pursue a career as a pediatric physician.
“In pediatrics it’s very much about helping children live with what they have,” she says. “It’s about getting their symptoms controlled to a point where they can do the things they want to do.”
This is a philosophy that also drives her own approach to the disease she lives with.
She has never met anyone in person who also has this rare disease – though she had perused some online support forums – but recently she connected with a teenager in the U.S. who is also living with Ehlers-Danlos. They star in “Beyond Xbox: A Player Like Me,” the next film in the Xbox “Beyond” series, which began with “Beyond Generations.”
“It was actually really easy to talk to him. It was almost like I was talking to myself a few years ago,” says Shaw, who chatted with Jordan Strong, 15, through a headset while the two played the auto racing game Forza Horizon 5. Shaw played from her home, while Strong used a GO Kart (Gamers Outreach Kart) system outfitted with an Xbox Series S at a facility where he does physical therapy every other week.
The two spent hours getting to know one another as they played the game.
“I’m not that much older than him, but I didn’t know whether we would have anything in common,” Shaw says. “But it turns out we have quite a lot in common.”
They share a love of music. She plays the piano; he sings in choirs. They both have siblings who are able to do things they wanted to do but couldn’t: baseball for him, diving for her.
There was good-natured ribbing too, as Strong joked about Shaw’s driving skills as they played the game. (In her defense, she notes that they do drive on the other side of the road where she lives.) They both spent time trying to find each other on the Forza map, too. Their conversation ebbed and flowed naturally, but in-between the fun chats, they also talked about some serious topics.Jordan Strong playing Forza Horizon 5 while chatting with Megan Shaw
“We talked about how sometimes you get medical advice, but at the end of the day you know your own body. You’re the one who has to live with it,” Shaw says. “It’s just nice talking to someone who understands. I think at the end of the day, it doesn’t matter that they are a different age from you or they’re in a different country. My friends or family are really supportive, but it’s quite a difficult thing to understand if you’ve never experienced it.”
Strong, a high school freshman in a small town in Georgia, had never even talked to someone else who had Ehlers-Danlos. Though he and Shaw have different sub-types of the disease, he still found a lot of value in their conversation – and hoped to connect again.
“It was really cool to see beyond Ehlers-Danlos that we share common interests and understand each other, more than just what are you going through,” says Strong, who admired Shaw’s active and outgoing life. “That was surprising, how she could put aside the risks a little bit.”
The film emerged as the next in Xbox’s experimental storytelling series that focuses on how gaming can be an important medium for connecting to others, especially during the pandemic. “Beyond Generations,” which debuted in December 2020, showed how a U.K.-based grandfather and grandson separated by lockdowns kept in touch over their headsets and through games.
We talked about how sometimes you get medical advice, but at the end of the day you know your own body. You’re the one who has to live with it.
The idea for the series came from real people found through forums, who yearned to be closer to their families and reconnect in meaningful ways.
“Gaming is such an important connector. That is the common thread in this series. It can apply to so many different things,” says Michael Flatt, the U.K.-based director of integrated marketing at Xbox. For the follow-up to the first film, the team wanted to explore a dynamic between strangers linked by something they had in common. “Wouldn’t it be even more powerful if we were to initiate a relationship between two people going through a condition quite rare, who couldn’t speak readily about it to another patient, to meet someone going through the same thing? That was the spark of this project.”
So they found Strong and Shaw and wanted to see if gaming could facilitate a conversation between them.
“He’s just such a remarkable human being, with so much positivity and fortitude given everything he’s going through,” Flatt says. “And then we reached out to Megan in Scotland. She has actually been through that and dealt with it and is still living it.”
This film was also a way to shine a light on the work of Gamers Outreach, an Xbox partner of several years founded in 2007 by Zach Wigal, when he was still a high school student near Ann Arbor, Michigan. They provide portable video game kiosks (GO Karts) to more than 300 hospitals around the U.S., including 90% of pediatric hospitals.Hospital staff dress in Minecraft costumes and provide a GO Kart to help brighten the day of a child receiving treatment. (Photo courtesy of Gamers Outreach)
The nonprofit emerged out of a cancelled Halo tournament Wigal had organized. Determined to move forward and counter negative perceptions of gamers and gaming, Wigal and his friends created a new event to illustrate the positive impact gamers can make when they come together to play video games. In 2008, Gamers for Giving was born, a competitive tournament that provided gamers with an opportunity to play video games while raising money for charity.
“I always thought of games as something that brought people together,” says Wigal, who has grown Gamers Outreach into a remote working team that operates around the U.S. “I played games to socialize, to be enveloped in a story and to express creativity. I felt that this was a moment to demonstrate positive things that can happen.”
By accident, Wigal stumbled upon a local hospital having a difficult time providing kids with activities. He toured the hospital and found out they had some handheld games, but they had to constantly manage the devices, and the young patients had to go to playrooms to use them.
Gaming is such an important connector. That is the common thread in this series.
Wigal approached the situation through the lens of being a gamer – as none of the hospital staff had that perspective – and suggested building them a mobile gaming cart, repurposing existing medical products. Wigal subsequently found out other pediatric hospitals have problems providing play for youngsters, as the focus of those facilities tends to be on research and treatment. Their goal is to get kids out of the hospital.
Wigal discovered along the way that video games are unique at making play available across a large scale. He found that therapy dogs can only see so many kids in a day. Same with music therapists. They’re limited. Playrooms are great, but some kids can’t physically get there.
So he worked on this idea that if he could create a way for hospitals to easily manage devices, more kids could have fun with content that could be tailored to their age, and enjoy it with friends and family. Wigal approached Gamers Outreach as a passion project until he was able to quit his full-time job, when donated gaming gear could no longer fit in his parents’ basement. He built up resources and focused on the program and expanded it. The organization is now working on a way to bring PC gaming to kids in hospitals.A patient enjoys game time with a Gamers Outreach Kart (GO Kart) with assistance from the Xbox Adaptive Controller. (Photo courtesy of Gamers Outreach)
“Any team that is set up to try and help young kids going through what they’re going through in hospital is pretty jaw dropping, really invaluable work,” Flatt says of Gamers Outreach. “They’re a force for good. People need to see the work they’re doing.”
Now, Gamers Outreach physically manufactures GO Karts and assembles them in Texas with an Xbox console. They’re built for hospitals to be able to plug and play, easily. The kits go to where video games may not have existed or were available in a limited capacity, so they can be wheeled room to room, giving hospitals the means and tools to make games easy to manage.
Like other kids, Strong appreciates the access and the opportunity to share his experiences, in his case through gaming with Shaw. He came away from their conversation with insights that could only come from talking to someone who’s gone through the same things.
“It was definitely good to know even if I have a passion to do something, I shouldn’t just ignore it,” he says. “It was just inspiring in general, to talk to her. The last thing I would want someone to do is to pity me. Having Ehlers-Danlos has opened my perspectives to other interests. I look for the positives instead of thinking of what I have as a burden.”
Lead photo: Megan Shaw and Jordan Strong chatting as they play Forza Horizon 5, from her home in Scotland and his physical therapy facility in Georgia.