This Stranger Things Star Opened Up About His Life-Changing Disability

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The kids stand in terror, faces agog as they stand off against an unspeakable terror from another world. Likewise, audiences gasp from the edges of their seats, transfixed by the drama unfolding in one of the television events of the past decade. Critics and viewers are in agreement: Stranger Things is a hit of the biggest kind.

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And among all the hype, online chatter, gossip, rumors and praise lie the human stories. These are the tales behind the cast of young actors who’ve been catapulted to fame as a result of their leading roles in Netflix’s international smash hit. Although established stars such as Winona Ryder and Sean Astin feature, it’s this band of previous unknowns who’ve proven the real force behind the show’s success. None more so than New Jersey native, and unlikely star, Gaten Matarazzo, aka Dustin Henderson.

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The curly-haired, perma-grinning Matarazzo has undoubtedly been one of the break-out stars of Stranger Things, which has had three seasons to date, with a fourth set to air in 2020. Matarazzo portrays lovable geek Dustin Henderson in the hit series, but his tell-tale speech impediment hints at the personal challenges Matarazzo has had to overcome in finding international acting fame.

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Indeed, speech issues have been a minor distraction in comparison to other challenges Matarazzo has had to face. That’s because beneath the twinkling smile and infectious enthusiasm evident in Matarazzo’s acting is a young man who lives with a profound disability. And it’s one that’s meant the star has been battling against the odds for most of his young life.

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The Duffer brothers’ Stranger Things has been a television sensational along the lines of Game of Thrones or Breaking Bad. Originally released on streaming service Netflix back in July 2016, the Duffers initially had difficulty finding a cable network willing to support the project. Nonetheless, their script eventually found its way to Shawn Levy at 21 Laps Entertainment, who saw its potential.

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One reason that so many cable networks passed on the Duffer brothers’ idea was that the story focused on a band of misfit kids. The consensus was that a show based around the friendships and mishaps of a bunch of teenagers wouldn’t hold sway with an adult television audience. The feeling was that the story should either be converted into a series aimed at kids or else focus instead on the adults in the plot.

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Thankfully for Matarazzo and co-stars including Finn Wolfhard (Mike Wheeler), Caleb McLoughlin (Lucas Sinclair), Noah Schnaap (Will Byers) and Millie Bobby Brown (Eleven), the Duffers stuck to their guns. And, eventually, 21 Laps Entertainment gave the series the green light. What’s more, Netflix was soon on board as well.

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And so Stranger Things hit home screens in the summer of 2016. Before long it was attracting significant buzz among audiences and critics alike. Part of the appeal of the show was the entirely intentional and unashamed homage it pays to the pop culture of the 1980s. Directorially, there are clear nods to the likes of Steven Spielberg and John Carpenter, with the kid-dominated cast also being reminiscent of 1980s movie classic The Goonies.

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The story of Stranger Things centers around the friendship between four self-proclaimed nerds: Mike Wheeler, Will Byers, Lucas Sinclair and Dustin Henderson. The king geek among the four in undoubtedly Henderson, played so convincingly by Matarazzo. Indeed, the character of Henderson and the performance of Matarazzo have become two of the biggest success stories associated with a show that has claimed more than its fair share of awards to date.

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Over the course of its three completed seasons, Stranger Things has so far bagged an incredible 31 Primetime Emmy Award nominations and a further four nods from the Golden Globes. Among the awards the show has won are a couple from the American Film Institute and a Critics’ Choice Television Award. Matarazzo has picked up both a Screen Actors Guild Award as part of an ensemble cast and the Best Actor gong at the Shorty Awards in 2017.

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Matarazzo has also garnered significant praise and a large fan-base for his portrayal of the lovable Henderson on the series. But in so many ways, the youngster is an unlikely TV idol. The speech impediment so clearly evident in the show is Matarazzo’s, not a written-in character ailment. And it’s a health issue that represents the tip of the iceberg.

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Matarazzo was just 14 years old when Stranger Things hit screens on Netflix in 2016. Born Gaetano John Matarazzo III in 2002, he’s the second child of Heather and Gaetano Matarazzo. The actor has both a younger brother and an older sister, and he grew up in New Jersey’s Little Egg Harbor Township.

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Matarazzo attended Pinelands Regional High School, located not far from Little Egg Harbor in Tuckerton, New Jersey. And by that stage, the youngster had already embarked on an acting career that surprised even his mother. It all began by accident, in fact, at an event that Matarazzo’s older sister was attending.

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At a talent showcase that Sabrina Matarazzo persuaded her mother to take her to, her younger brother went along for the ride. After unexpectedly receiving an offer of work, to the amazement of his mother Matarazzo decided to give it a shot.

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Matarazzo recalled the events surrounding his acting beginnings in a 2017 interview with The Daily Beast. “I didn’t know the first thing about acting but I was like, ‘Yeah!’ And my mom went, ‘Really?’ And I was like, ‘Uh-huh! Let’s just do it, it’s probably cool,’” the teen remembered.

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And so it was there, at the talent showcase attended by his sister, that Matarazzo’s acting career began. Moreover, come the tender age of 12, a year before he was cast in Stranger Things, the New Jersey native had already featured in touring productions of both Les Misérables and Priscilla, Queen of the Desert. He even had time to take on a small role in popular NBC drama The Blacklist.

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Matarazzo is an unlikely acting star in so many ways, but most of all because he was born with a birth defect called cleidocranial dysostosis (CCD). The condition is sometimes referred to as cleidocranial dysplasia. It afflicts the teeth and bones of sufferers, and although there are no standard symptoms or physical impairments, typical manifestations do exist.

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Firstly, sufferers’ collarbones are often underdeveloped or sometimes even completely absent. This results in the shoulders being situated nearer to each other than in non-sufferers. Those with the condition are often shorter than the general population, too. They may also have flatter noses, teeth deformations and conspicuous foreheads. CCD doesn’t affect IQ, however, and life expectancy is also normal.

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Unfortunately for sufferers, there’s no set way of alleviating the symptoms of CCD, other than corrective dental procedures and other intrusive operations to rectify bone abnormalities. Indeed, surgery is something that CCD sufferers regularly have to contend with. No cure currently exists, and so it’s something that affects the individual, in one way or another, for life.

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Moreover, Matarazzo has been incredibly open about his condition. And the defect has also been written into the backstory of Dustin Henderson in Stranger Things. Indeed, in the first episode of season one, when Henderson has no teeth, he confronts schoolyard bullies with the line: “I told you a million times, my teeth are coming on. It’s called cleidocranial dysplasia”.

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Furthermore, Matarazzo wears dentures, and a plotline was written into series two of Stranger Things to cover that as well. Amusingly, in season three, Henderson attributes his lack of dentures at that time to his on-screen girlfriend Suzie, stating that she thinks “kissing without teeth is way better”.

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Matarazzo spoke candidly about his condition on an episode of CBS’s The Doctors in 2018. “I have extra teeth. A lot of people don’t see that and they think I don’t have any teeth,” the star said. “I have a lot of teeth actually, that is – they are just not coming down. And I think it happens with a lot of people with the condition. It’s that your body just doesn’t know that you’re going to have a set of baby teeth that are going to fall out, and then you’re going to have a set of adult teeth. So, like, your baby teeth don’t come in properly.”

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As well as talking about his condition and thus increasing the public’s knowledge of CCD, Matarazzo also supports a group called CCD Smiles, which helps with the costs of CCD-related operations for sufferers. The actor frequently uses social-media platforms to inform people of ways they can help the foundation financially.

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And there’s little doubt that Matarazzo has used his platform well to draw attention to the little-known condition. According to a study that was published in the JAMA medical network, the results of Matarazzo’s actions have been clear. “Relative search interest for CCD demonstrated an increase of 94.4% above the expected search interest the week after the release of the most recent season of Stranger Things (season 3),” the report read.

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That wasn’t all that the author, Austin L. Johnson, had to say in the report, either. “In addition, all contacted CCD-related foundations reported an increase in public interest about CCD after the release of Stranger Things,” the study noted. “The release of each season of Stranger Things has been associated with an increase in weekly search interest for CCD above expected.”

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During his appearance on The Doctors, Matarazzo was also frank about the damage his condition caused to his career prospects before his big break on Stranger Things. “[CCD is] one of the biggest reasons why I haven’t been getting roles,” he said. “I would go three times a week up for auditions and just [hear] ‘No’ constantly.”

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Matarazzo further elaborated on his difficulties in finding acting work in a 2016 interview with U.K. radio station BBC 5 Live. “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,” the actor said.

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The actor pointed out that the reasons for Matarazzo failing to land work weren’t always due to prejudice against his condition, though. “[Not getting jobs was] because they couldn’t write in a disability into the show because they had already written the script,” he explained.

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The Duffer brothers, the show’s creators, have spoken about how they basically wrote the part around Matarazzo after meeting the youngster at casting sessions. “Some of [the child actors cast] matched the characters in the script and some of them didn’t, really,” Matt Duffer told The Daily Beast.

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Matt further elaborated on how meeting Matarazzo changed the way the brothers saw the character of Dustin Henderson. “I don’t think we really understood who [Henderson] was,” Matt admitted. “He started out more like a stereotypical nerd. And then we met Gaten, and we basically tailored the show to him.”

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There’s no doubt that meeting the Duffers has not only changed Matarazzo’s life, but it’s also indirectly helped the lives of many others afflicted by CCD, too. “It’s a very rare condition and not many people have it around the world,” Matarazzo told The Daily Beast, referring to the fact that little is known about the disease by the public at large.

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Having an actor with CCD in an internationally popular TV series changed the game for some sufferers, in fact. “When they [the Duffers] wrote it into the show, I [started] getting a lot of messages and emails online from people who have the condition, saying that it really helps them come out of their shells a little bit,” Matarazzo recalled.

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Matarazzo displays maturity beyond his years when talking about his condition and the impact it has had on his life. He also shows admirable maturity and empathy when talking about others with the genetic condition. “[I’m lucky] because a lot of people have it much worse than I do and it affects them much worse than it does me,” he stated.

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“I’ve always liked to embrace the condition, but other people don’t feel the same way,” Matarazzo continued. “They say that 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.”

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Matarazzo doesn’t just talk about his condition, either. In January 2020 he took to his Instagram account to share details of a surgery he was set to have. Accompanying a picture of the actor in a hospital bed was the following text: “Surgery number four! This is a big one! To learn more about Cleidocranial Dysplasia and how you can help those with the condition you can go to ccdsmiles.org.”

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Matarazzo went under the knife to have some teeth removed. Afterwards, he updated his followers on Instagram about his progress, stating that “the surgery was a complete success. This was such a big one, it may be the last one I need. Hopefully at least.” Unsurprisingly, Matarazzo received thousands of goodwill messages. And the youngster has made it clear that the support he receives from fellow sufferers means a lot to him. “Those messages really inspired me,” he told The Daily Beast.

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Matarazzo also feels grateful towards the creators of Stranger Things. Indeed, the actor speaks effusively about the Duffer brothers. “I look up to them like they’re my older brothers. I mean, they’re just great guys,” he said. “They inspired a lot of people to come out of their shells and embrace what they have.”

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As well as recovering from his latest surgery, Matarazzo is keeping himself extremely busy. Netflix have announced that a fourth series of Stranger Things will hit the screen sometime in 2020. And the teen also helms his own show, Prank Encounters. Acting isn’t his only love, either, as he sings in a rock band called Work in Progress. But all these projects might easily never have been.

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Fortunately for Matarazzo and his legions of fans, though, the lovable actor met a certain two brothers. “I think what the Duffer brothers, the directors of the show, what they really wanted to do was they really wanted to make sure that each character in the show was unique and they had something that was realistic and personal,” Matarazzo said on The Doctors.

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So, it was the ability of the creators of Stranger Things to see past a young man’s disability that meant the world could enjoy Matarazzo’s performance as the cuddly Dustin Henderson. And it’s fair to say that Stranger Things, despite its 1980s nostalgia and classic horror film pretext, wouldn’t be the same without him.

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