According to a story from BBC, Mats Steen passed away at 25 years old due to complications from his Duchenne muscular dystrophy. Upon his death, parents Robert and Trude grieved in dismay at the life that their son had lived, which they had perceived as lonely and isolated. In later years, Mats spent much if his life in his family’s basement. His parents were surprised to learn that their son would in fact be remembered by dozens of people across Europe that he had met online in the massive multiplayer online role playing game World of Warcraft.
About Duchenne Muscular Dystrophy
Duchenne muscular dystrophy is a neuromuscular disease, and it is one of the more severe types of muscular dystrophy. It is characterized by progressive muscle weakness that usually begins around age four and worsens quickly. As an X-linked genetic disease, boys are mostly affected, with girls only occasionally displaying mild symptoms. The disease is caused by mutations of the dystrophin gene. Symptoms of Duchenne muscular dystrophy include falling, abnormal walking posture, eventual loss of walking ability, muscle fiber deformities, intellectual disability (not in all cases), enlargement of the tongue and calf muscles, skeletal deformities, muscle atrophy, heart abnormalities, and difficulty with breathing. Treatment includes a variety of medications and therapies that can help alleviate symptoms and slow disease progression. Lifespan is usually into the thirties with good care. Better treatments for this disease are urgently needed. To learn more about Duchenne muscular dystrophy, click here.
Finding a New Life in Video Games
For many people that play them, video games can serve as a form of distraction or escapism from the tedium of daily life, but for someone like Mats, who became progressively more disabled over the course of his life, they can become a true refuge. In the video game world, disabled players no longer have to worry about being perceived as weak or different because of their disability.
Mats would often stay up late in the night playing the game, and the family were shocked when a bunch of people they didn’t know showed up for his funeral. They were all people that Mats had met while playing World of Warcraft. He may have not had many friends in the real world, but Mats had long lasting, meaningful friendships with players that he met in the game.
In World of Warcraft, Mats was part of a guild called Starlight, which had about 30 members. He eventually became good friends with all of them. He began to blog about his life and shared the blog with many of the guild members. This was the first time any of them realized that he had Duchenne muscular dystrophy.
Several of the guild members pooled together funds so that they could travel for the funeral. Robert and Trude were amazed by the outpouring of support and the realization that their son had never been alone. In World of Warcraft, Mats transcended his physical limitations and touched the lives of many.