{"id":268219,"date":"2025-01-06T12:27:23","date_gmt":"2025-01-06T12:27:23","guid":{"rendered":"https:\/\/michigandigitalnews.com\/index.php\/2025\/01\/06\/his-own-body-weakened-by-a-rare-disease-a-gamer-adopts-a-stronger-one-and-leaves-a-legacy-within-world-of-warcraft\/"},"modified":"2025-06-25T17:09:48","modified_gmt":"2025-06-25T17:09:48","slug":"his-own-body-weakened-by-a-rare-disease-a-gamer-adopts-a-stronger-one-and-leaves-a-legacy-within-world-of-warcraft","status":"publish","type":"post","link":"https:\/\/michigandigitalnews.com\/index.php\/2025\/01\/06\/his-own-body-weakened-by-a-rare-disease-a-gamer-adopts-a-stronger-one-and-leaves-a-legacy-within-world-of-warcraft\/","title":{"rendered":"His own body weakened by a rare disease, a gamer adopts a stronger one \u2013 and leaves a legacy \u2013 within World of Warcraft"},"content":{"rendered":"<p> [ad_1]<br \/>\n<\/p>\n<div>\n<p>When Mats Steen was a little boy, he loved a small ceramic fox. In his native Norway, a fox is a \u201creven.\u201d\u00a0\u00a0<\/p>\n<p>His mother, Trude, says he carried everywhere. Back then, he could still walk on his own.\u00a0<\/p>\n<p>He was 7 years old when a wheelchair arrived at his house. His parents anticipated he would need it soon, as his muscles weakened due to a rare condition, Duchenne muscular dystrophy. He hated the wheelchair, so it stayed in the hallway.\u00a0 Even though he was stumbling and falling, he didn\u2019t want to use it. Eventually, he had to.\u00a0\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img fetchpriority=\"high\" fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"538\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoWScrnShot_102524_204749-1024x538.jpg\" alt=\"\" class=\"wp-image-8975\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoWScrnShot_102524_204749-1024x538.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoWScrnShot_102524_204749-768x404.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoWScrnShot_102524_204749-1536x807.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoWScrnShot_102524_204749-300x158.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoWScrnShot_102524_204749-1900x998.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoWScrnShot_102524_204749.jpg 1920w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">World of Warcraft players assembled at Ibelin\u2019s gravestone in-game.<\/figcaption><\/figure>\n<p>As an adult he was given a miniature fox as a birthday gift, something that was dear to him and that he saw every day on his living room shelf. When Mats passed away in 2014 at the age of 25, the Steens designed a gravestone with a fox carving.<\/p>\n<p>A virtual version of that gravestone appears in <a href=\"https:\/\/worldofwarcraft.blizzard.com\/en-us\/\" target=\"_blank\" rel=\"noreferrer noopener\">World of Warcraft<\/a> (WoW), a massively multiplayer online game (MMO) that was a big part of their son\u2019s last eight years of life. What they didn\u2019t know until after he died was how big of an impact he made on others while he was there.\u00a0<\/p>\n<p><strong>The public meets the private eye<\/strong>\u00a0<\/p>\n<p>In the role-playing environment of World of Warcraft, Mats was known as Ibelin, a robust and charming private investigator with a muscular physique and long red hair. His welcoming smile and gentle nature made him popular with other players.\u00a0\u00a0<\/p>\n<figure class=\"wp-block-image aligncenter size-large\"><img decoding=\"async\" width=\"1024\" height=\"554\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin-still-2-1024x554.jpg\" alt=\"Screenshot of two animated characters sitting side by side\" class=\"wp-image-8940\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin-still-2-1024x554.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin-still-2-768x415.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin-still-2-1536x830.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin-still-2-300x162.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin-still-2-1900x1027.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin-still-2.jpg 1998w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Ibelin and Rumour as seen in \u201cThe Remarkable Life of Ibelin.\u201d (World of Warcraft and Blizzard Entertainment \u00a9 2024\/Courtesy of Netflix)<\/figcaption><\/figure>\n<p>When WoW created an in-game tribute to him, the Reven Pack, which would also raise funds for <a href=\"https:\/\/cureduchenne.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">CureDuchenne<\/a>, an organization that supports research, early diagnosis and access to treatment, the game\u2019s producers chose a wily fox wearing a detective hat who could be carried by players in his own custom backpack.\u00a0\u00a0<\/p>\n<p>In a bit of kismet, the World of Warcraft artist who created the character, backpack and gravestone for the fundraising collaboration is also named Mats and is also Norwegian. The fundraiser runs through Jan. 7, 10 a.m. PST*.\u00a0<\/p>\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\">\n<p>\n<iframe title=\"Reven Pack Trailer | World of Warcraft\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/l4gFFKXmYH4?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><button class=\"cookie-consent-btn\">Click here to load media<\/button>\n<\/p>\n<\/figure>\n<p>In January,\u00a0 \u201c<a href=\"https:\/\/youtu.be\/lM_hkJ0Rl-c?si=m-wJ0_Yaps3tSi4R\" target=\"_blank\" rel=\"noreferrer noopener\">The Remarkable Life of Ibelin<\/a>\u201d premiered at the\u202f2024 Sundance Film Festival, where it won over audiences with the story of Mats and his life within World of Warcraft, a legacy that surpasses the digital space.\u00a0<\/p>\n<p>Norwegian filmmaker Benjamin Ree read a <a href=\"https:\/\/www.bbc.co.uk\/news\/disability-47064773\" target=\"_blank\" rel=\"noreferrer noopener\">BBC article<\/a> about Mats in 2019 and was inspired to seek out the Steens and Mats\u2019 friends in WoW to make a film about his story.\u00a0<\/p>\n<p>At Sundance, Ree\u2019s documentary <a href=\"https:\/\/www.sundance.org\/blogs\/2024-sundance-film-festival-announces-award-winners\/\">won<\/a> the Directing and Audience awards in the World Cinema\/Documentary category, leading to a streaming deal with Netflix. Subscribers were able to begin watching it in late October before the 10<sup>th<\/sup> anniversary of Mats\u2019 death on Nov. 18.\u00a0\u00a0It\u2019s also on the <a href=\"https:\/\/press.oscars.org\/news\/97th-oscarsr-shortlists-10-award-categories-announced\">shortlist<\/a> in the Documentary Feature Film category for the 97th Academy Awards (2025).<\/p>\n<p>In honor of the impact Mats made in Norway, the country created the <a href=\"https:\/\/www.medietilsynet.no\/nyheter\/aktuelt\/ibelinprisen-skal-fremme-inkludering-i-dataspill\/\" target=\"_blank\" rel=\"noreferrer noopener\">Ibelin Award<\/a>, which will be granted every year starting in autumn 2025 to a person considered a role model for gamers \u2013 someone who takes care of others.\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"576\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_3-1024x576.jpg\" alt=\"Screenshot of a World of Warcraft character carrying a fox in a backpack\" class=\"wp-image-8938\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_3-1024x576.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_3-768x432.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_3-1536x864.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_3-300x169.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_3-1900x1069.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_3.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Reven Pack shown on an avatar. (Screenshot courtesy of Blizzard)<\/figcaption><\/figure>\n<p><strong>Making a difference without ever meeting in person<\/strong>\u00a0<\/p>\n<p>Mats\u2019 avatar as a private investigator wasn\u2019t entirely fictional. He kept his rich gaming life and community private \u2013 so his impact was a surprise even to his parents.\u00a0<\/p>\n<p>\u201cWe knew that he was a good listener, but we had no respect for the digital gaming platform being an area where you could actually use this ability for anything,\u201d says Robert Steen, who served four years as Oslo\u2019s vice mayor of finance and four years as vice mayor of health.\u00a0\u00a0<\/p>\n<p>He and his wife also have an older daughter, Mia. \u201cWe were very much classic parents born in the \u201860s and we tried to limit the number of hours they spent in front of the screen. We had no idea about all these people he had interacted with and helped in different ways.\u201d\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"553\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_30_02_10-1024x553.jpg\" alt=\"Close-up of two parents looking at a screen\" class=\"wp-image-8942\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_30_02_10-1024x553.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_30_02_10-768x415.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_30_02_10-1536x830.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_30_02_10-300x162.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_30_02_10-1900x1027.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_30_02_10.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Trude and Robert Steen in \u201cThe Remarkable Life of Ibelin.\u201d (Photo courtesy of Netflix Studios)<\/figcaption><\/figure>\n<p>Robert recalled one of Mats\u2019 friends in World of Warcraft, Lisette (aka \u201cRumour\u201d), who is also prominent in the film.\u00a0<\/p>\n<p>\u201cHer parents thought they were going to help her by taking her computer away,\u201d he says. \u201cBut what they actually did without knowing it was to take her friends away, which led to this very deep depression that could have gone wrong if she didn\u2019t have people like Mats to be there for her and lead her through that process.\u201d\u00a0<\/p>\n<p>The film shows how Mats wrote Lisette\u2019s parents a letter to explain how important being part of their World of Warcraft community was, and that it was a real community who met in real life.\u00a0\u00a0<\/p>\n<figure class=\"wp-block-image aligncenter size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"553\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_00_59_35_10-1024x553.jpg\" alt=\"Group of people in a living room gathered around a laptop screen\" class=\"wp-image-8941\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_00_59_35_10-1024x553.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_00_59_35_10-768x415.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_00_59_35_10-1536x830.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_00_59_35_10-300x162.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_00_59_35_10-1900x1027.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_00_59_35_10.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Members of the Starlight Guild meeting up in-person. (Photo courtesy of Netflix Studios)<\/figcaption><\/figure>\n<p>Mats, though, resisted those in-person meetings. He could still talk at that stage of the disease, but he chose not to go on camera or participate in voice chats with his many friends in the game. It took a long time for him to reveal his condition to them, and when he did so, it was through a <a href=\"https:\/\/musingslif.blogspot.com\/\" target=\"_blank\" rel=\"noreferrer noopener\">blog post<\/a>.\u00a0<\/p>\n<p>His parents used that same blog to tell his online friends about his death and to leave their email address. The next day, messages from his community poured in.\u00a0<\/p>\n<p><strong>\u2018Emotional heart of the guild\u2019<\/strong>\u00a0<\/p>\n<p>Kai Simon Fredriksen, who is also based in Oslo, met Mats in World of Warcraft through their community \u2013 the Starlight Guild. Guilds are player-organized groups that provide a social structure for WoW gamers. Within these groups, they can chat with each other, team up on quests and missions, and share experiences.\u00a0<\/p>\n<p>Fredriksen calls them \u201cthe emotional heart of the guild.\u201d For him, it\u2019s those connections that make World of Warcraft \u2013 a franchise that spans 20 years \u2013 so engaging. He\u2019s tried other MMOs, but he keeps coming back to this game. \u201cIt\u2019s the people, the community,\u201d he says.\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"553\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_07_19_21-1024x553.jpg\" alt=\"\" class=\"wp-image-8971\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_07_19_21-1024x553.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_07_19_21-768x415.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_07_19_21-1536x830.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_07_19_21-300x162.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_07_19_21-1900x1027.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_07_19_21.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Starlight Guild assembled within World of Warcraft with Ibelin. (World of Warcraft and Blizzard Entertainment \u00a9 2024\/Courtesy of Netflix)<\/figcaption><\/figure>\n<p>WoW is a social place where you have room to tell stories \u2013 particularly important for role players like him. Soon after he joined, Fredriksen, whose character is a con artist, became the leader of the Starlight Guild. At its most active, there were 40 to 50 players in the group.\u00a0\u00a0<\/p>\n<p>\u201cIf you find your tribe, you find people who enjoy the kind of gaming experience and community you do,\u201d he says. \u201cYou have a support network and people to show you new things.\u201d\u00a0<\/p>\n<p>Mats, through his Ibelin character, found Starlight through the guild\u2019s events throughout the game. Fredriksen says their group had a good reputation and were seen as one of the more serious and established role-playing guilds, so players applied to join them. Once he turned 16, Mats submitted his application.\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"553\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_26_22_08-1024x553.jpg\" alt=\"\" class=\"wp-image-8976\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_26_22_08-1024x553.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_26_22_08-768x415.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_26_22_08-1536x830.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_26_22_08-300x162.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_26_22_08-1900x1027.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_26_22_08.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Kai Simon Fredriksen in \u201cThe Remarkable Life of Ibelin.\u201d (Photo courtesy of Netflix Studios)<\/figcaption><\/figure>\n<p>The rigorous application process included two interviews, both in character and out of character, vetted by several Starlight members. Mats seemed to be a good fit for Starlight, someone Fredriksen could imagine on adventures, who would be reliable, fun and engaging.\u00a0\u00a0<\/p>\n<p>What especially stood out to Fredriksen about Mats were his questions. He consistently took the time to listen. When he asked a fellow gamer why she was upset, for example, and learned that she was struggling to connect with her teenage son, he offered suggestions.\u00a0\u00a0<\/p>\n<p>Those conversations come to life in the film, which used original animation, dozens of videocassettes from the Steens documenting Mats\u2019 life and thousands of hours of logged chats from Starlight to recreate poignant moments Mats experienced in the game.\u00a0<\/p>\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\">\n<p>\n<iframe title=\"The Remarkable Life of Ibelin | Official Trailer | Netflix\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/lM_hkJ0Rl-c?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><button class=\"cookie-consent-btn\">Click here to load media<\/button>\n<\/p>\n<\/figure>\n<p><strong>A life ends, a legacy begins<\/strong>\u00a0<\/p>\n<p>Fredriksen didn\u2019t know about his friend\u2019s condition until nearly the end of Mats\u2019 life. After Mats passed away, the guild collected money so members could attend his funeral.\u00a0<\/p>\n<p>Every year on the anniversary of his death, members of the guild join other WoW players to run the same route in the game that Mats\u2019 character Ibelin regularly ran when he logged on. This year\u2019s run was the most attended ever, thanks to the attention generated by the Netflix documentary. In private earlier that day, the guild honors him at a memorial service that his parents attend as their shared dwarf avatar, whose name is Stoen2 (Ibelin\u2019s best friend in WoW was a dwarf called Stoen).\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"553\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_37_33_06-1024x553.jpg\" alt=\"\" class=\"wp-image-8987\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_37_33_06-1024x553.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_37_33_06-768x415.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_37_33_06-1536x830.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_37_33_06-300x162.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_37_33_06-1900x1027.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_37_33_06.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">World of Warcraft avatars honoring Ibelin at an in-game memorial. (World of Warcraft and Blizzard Entertainment \u00a9 2024\/Courtesy of Netflix)<\/figcaption><\/figure>\n<p>\u201c[The Steens] have come to understand gaming so much better, and they want to talk to other parents about this,\u201d Fredriksen says. \u201cIt\u2019s a very personal and painful story. But it\u2019s also universal in the experience of being in a community, of having people engage with you and build relationships.\u201d\u00a0\u00a0<\/p>\n<p><strong>Sharing a new understanding of gaming with other parents<\/strong>\u00a0<\/p>\n<p>After Mats died, the Steens found solace in a new understanding of their son\u2019s vibrant inner life. That he had kept it private ignited a fire in them: to help other parents realize the benefits of gaming and how it fosters connections among players.\u00a0<\/p>\n<p>\u201cWe\u2019ve been asking ourselves the question, \u2018Why did we not see this while he was alive?\u2019\u00a0Because we lived under the same roof for all his life, we saw each other every day and still there were so many things we did not see. We don\u2019t know about them because the most important things of our lives happen inside our heads,\u201d says Robert.\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"553\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_29_56_20-1024x553.jpg\" alt=\"\" class=\"wp-image-8988\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_29_56_20-1024x553.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_29_56_20-768x415.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_29_56_20-1536x830.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_29_56_20-300x162.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_29_56_20-1900x1027.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/Ibelin_01_29_56_20.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Steen family: Trude, Robert and Mia. (Photo courtesy of Netflix Studios)<\/figcaption><\/figure>\n<p>\u201cWe only tried to sit beside him and watch the screen without understanding what was going on. So, after half an hour or so, we got bored. We left for the real screen, which is called television in Norway. Football was on the television, and I understand football.\u201d\u00a0<\/p>\n<p>Gaming is the biggest leisure activity in Norway \u2013 more than 85% of all teens game regularly. The Steens have become more informed about the national pastime and are passionate about discussing it with other parents.\u00a0\u00a0<\/p>\n<p>\u201cIf we as parents should have any chance of being guiding and supporting forces, we need to understand what is going on in this digital world,\u201d Robert says. \u201cYou shouldn\u2019t take over their world, but you should show respect and curiosity.\u201d\u00a0<\/p>\n<figure class=\"wp-block-image aligncenter size-medium\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"434\" height=\"578\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-434x578.jpg\" alt=\"\" class=\"wp-image-8989\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-434x578.jpg 434w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-512x683.jpg 512w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-768x1024.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-1152x1536.jpg 1152w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-1536x2048.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-211x281.jpg 211w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-540x720.jpg 540w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-720x960.jpg 720w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-150x200.jpg 150w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-951x1268.jpg 951w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-300x400.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-1024x1366.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/IMG_8183-scaled.jpg 1920w\" sizes=\"(max-width: 434px) 100vw, 434px\"\/><figcaption class=\"wp-element-caption\">Hawken Miller playing World of Warcraft. (Photo courtesy of Hawken Miller)<\/figcaption><\/figure>\n<p>Hawken Miller is grateful to the Steens for passing on their lessons to his parents. Like Mats, he has Duchenne and is a longtime gamer. He will turn 28 on the last day of the World of Warcraft charity campaign.\u00a0<\/p>\n<p>He was about 6 years old when his parents gave him a Game Boy, and he eventually built his own PC gaming rig because it was easier to play with a keyboard and mouse. As a journalist, he covered esports, creating weapon loadout guides for The Washington Post and game reviews.\u00a0<\/p>\n<p>\u201cI\u2019m glad that this documentary can help my mom and many other parents understand that there\u2019s more to what meets the eye,\u201d says Hawken. \u201cYou\u2019re trying to be someone you aren\u2019t in real life, and it\u2019s especially powerful if someone has a disability and they can\u2019t do all those things. It\u2019s the closest thing that they could come to doing it in real life, so that definitely resonated with me.\u201d\u00a0<\/p>\n<p>He says that just being in a game with others regularly provides the socializing that people crave in their busy lives.\u00a0\u00a0<\/p>\n<p>\u201cIf you know it\u2019s 6:30 p.m., on a weekday and some of the guys are going to be on, just to have that place to hang out and play with them, is building a connection, even if you aren\u2019t talking about your lives,\u201d he says.\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"683\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240526_3567-1024x683.jpg\" alt=\"A couple flanking their adult son who's in a wheelchair, all smiling\" class=\"wp-image-9002\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240526_3567-1024x682.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240526_3567-768x512.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240526_3567-1536x1024.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240526_3567-300x200.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240526_3567-1900x1266.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240526_3567.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Debra, Hawken and Paul Miller. (Photo courtesy of Debra Miller)<\/figcaption><\/figure>\n<p>Hawken\u2019s mother, Debra Miller, who founded CureDuchenne more than 20 years ago after Hawken was diagnosed, says she was a \u201ctypical mom\u201d who gave her son a hard time about spending too much time on video games, especially after he graduated from USC in 2019 and moved back home. That turned into an extended stay when the pandemic lockdowns happened. It took <a href=\"https:\/\/www.bbc.com\/news\/disability-47064773\" target=\"_blank\" rel=\"noreferrer noopener\">reading about Mats<\/a> and meeting the Steens to change her viewpoint on gaming.\u00a0<\/p>\n<p>\u201cAfter we came back, there was one night that my husband and I were watching TV, and we could hear Hawken playing a game online and he was laughing, trash talking and just having a great time. It gave me a whole different perspective on what he\u2019s doing,\u201d she says. \u201cPreviously, I considered his time on video games to be totally recreational and at the expense of either school or work or true relationships, but I am now able to better understand the relationship-building within the game.\u201d\u00a0<\/p>\n<p><strong>Every generation is luckier than the previous generation<\/strong>\u00a0<\/p>\n<p>Debra, Hawken\u2019s mom, is hopeful that new treatments on the horizon will allow her son and others with Duchenne to live longer, a direct result of the work her organization has funded over the past two decades.\u00a0\u00a0<\/p>\n<p>\u201cEvery generation is luckier than the previous generation,\u201d she says of the advancements in treatment.<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"683\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240524_1606_resize-1024x683.jpg\" alt=\"Three boys sitting playing video games using controllers\" class=\"wp-image-8939\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240524_1606_resize-1024x682.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240524_1606_resize-768x512.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240524_1606_resize-1536x1024.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240524_1606_resize-300x200.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240524_1606_resize-1900x1266.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/CD_Futures_20240524_1606_resize.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Kids playing video games during a 2024 Futures Conference organized by CureDuchenne. (Photo courtesy of CureDuchenne)<\/figcaption><\/figure>\n<p>\u00a0<\/p>\n<p>She had never heard of Duchenne \u2014 a rare genetic condition that causes progressive muscle damage and weakness \u2014 before Hawken\u2019s diagnosis. She worked in advertising sales and technology before founding CureDuchenne.\u00a0\u00a0<\/p>\n<p>The nonprofit organization helps fund early-stage biotech companies that develop promising, novel science for treating Duchenne and has invested more than $26 million in research since its creation more than 20 years ago. These investments have paved the way for venture capital firms and pharmaceutical companies to invest an additional $3.65 billion directly into these biotech companies, further advancing their programs.\u00a0\u00a0<\/p>\n<p>CureDuchenne has also created resources and support workshops around the country for families with Duchenne, including an annual national conference featuring a gaming lounge where kids from around the country can play video games together.\u00a0<\/p>\n<p><strong>\u2018Games can change lives\u2019<\/strong>\u00a0<\/p>\n<p>While <a href=\"https:\/\/www.blizzard.com\/en-us\/\" target=\"_blank\" rel=\"noreferrer noopener\">Blizzard<\/a>, the studio behind WoW, had reached out to the Steens after reading about Mats in 2019, they were unaware of the film until it had already been in the works for three years. Once they screened the almost-finished version, they granted their full support to use their intellectual property in the animation.\u00a0<\/p>\n<p>\u201cThere are moments in this business where you recognize that we make entertainment, but sometimes it\u2019s more than that,\u201d says Holly Longdale, a 20-year-plus veteran in the gaming industry and executive producer of World of Warcraft. \u201cWe really see the impact on someone\u2019s life, how games can change lives. Those are the memories in a career that really matter.\u201d\u00a0<\/p>\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"576\" src=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_4-1024x576.jpg\" alt=\"\" class=\"wp-image-8991\" srcset=\"https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_4-1024x576.jpg 1024w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_4-768x432.jpg 768w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_4-1536x864.jpg 1536w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_4-300x169.jpg 300w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_4-1900x1069.jpg 1900w, https:\/\/news.microsoft.com\/source\/wp-content\/uploads\/2024\/12\/WoW_The_War_Within_2024_Charity_Pet_Reven_Pack_4.jpg 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\"\/><figcaption class=\"wp-element-caption\">Rumour and Ibelin chasing after a \u201creven.\u201d (Screenshot courtesy of Blizzard)<\/figcaption><\/figure>\n<p>Mats\u2019 memorial has drawn not just those who knew him, but others who want to remember someone they lost, says Longdale, whose career has focused mainly on MMOs. She isn\u2019t surprised that bonds are so meaningful and longstanding within WoW. She\u2019s known players who\u2019ve met in-game, gotten married, had children and now play with their children in-game.\u00a0<\/p>\n<p>People start connecting with each other based on how they play, so they find each other in the world, she says. Mats and his guild found each other, in part, because they identified as like-minded role players.\u00a0<\/p>\n<p>\u201cThe beauty and relatability of World of Warcraft as a world is certainly epic. And it can be dark, fighting monsters and stuff,\u201d Longdale says.\u00a0<\/p>\n<p>\u201cBut the world itself is full of whimsy, humor, love and life. And it is a place you can just hang out in. For example, in the cities, there\u2019s always people milling about and people dancing on mailboxes. Even if you\u2019re just on by yourself, you never feel alone.\u201d\u00a0<\/p>\n<p>\u00a0<em>Buy the\u202f<\/em><a href=\"https:\/\/blizz.ly\/48hKbMV\" target=\"_blank\" rel=\"noreferrer noopener\"><em>Reven Pack<\/em><\/a>*<em>\u202fby Jan. 7, 10 a.m. PST to support CureDuchenne.<\/em>\u00a0<\/p>\n<p><em>Lead photo: Mats Steen, as seen in \u201cThe Remarkable Life of Ibelin.\u201d (Photo courtesy of Robert and Trude Steen\/Netflix Studios)<\/em><\/p>\n<p><strong><em>*<\/em> <em>Now through January 7, 2025, 10 a.m. PST<\/em><\/strong><em>, Blizzard Entertainment will donate 100% of the purchase price of \u201cThe Reven Pack\u201d digital bundle to CureDuchenne, less any chargebacks, refunds, transaction fees<s>,<\/s> and Value Added Taxes (VAT), or other similar taxes paid. These versions of items are special editions available as part of this initiative only. Buying or purchasing this digital item is a license.<\/em>\u00a0<\/p>\n<\/div>\n<p>[ad_2]<br \/>\n<br \/><a href=\"https:\/\/news.microsoft.com\/source\/?post_type=features&#038;p=8936#new_tab\">Source link <\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>[ad_1] When Mats Steen was a little boy, he loved a small ceramic fox. In his native Norway, a fox is a \u201creven.\u201d\u00a0\u00a0 His mother,<\/p>\n","protected":false},"author":1,"featured_media":268220,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"footnotes":""},"categories":[160],"tags":[],"_links":{"self":[{"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/posts\/268219"}],"collection":[{"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/comments?post=268219"}],"version-history":[{"count":0,"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/posts\/268219\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/media\/268220"}],"wp:attachment":[{"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/media?parent=268219"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/categories?post=268219"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/michigandigitalnews.com\/index.php\/wp-json\/wp\/v2\/tags?post=268219"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}