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Gaten Matarazzo Was Born With a Genetic Disorder but Found the Strength to Cope With it and Help Others

Becoming a successful actor in Hollywood isn’t easy for anyone. But for some people, it’s even harder. Gaten Matarazzo, for example, was born with a rare condition that caused him to have problems with articulation, teeth, and bone development. But the difficulties didn’t stop the young actor. He managed to show all he’s capable of and win the hearts of millions of viewers.

ANGELA WEISS / AFP / East News

Gaten Matarazzo’s road to success was not an easy one. Ever since he was born, the boy’s been unwell. He has a rare genetic disorder called cleidocranial dysplasia, or CCD. It occurs in one in a million people and is associated with bone development problems in the clavicles, skull, and especially the teeth. That’s why Gaten has to have regular surgery at the orthodontist’s office. He has none of his permanent teeth, only baby teeth and false ones. He also has no clavicles, which is why he can move his shoulders very close together.

It’s a condition where you’re born without your collar bones; I don’t have any. It affects your facial growth, your skull growth; it affects your teeth, so that’s why I don’t have any.

Gaten always wanted to succeed in show business, so he persevered by going to many auditions. The boy was talented, but the agents didn’t want to take any risks. As soon as they heard about his condition, rejection followed. They said: “Oh kid, we adore you, but sure, just get those teeth in, [otherwise] you’re not going to have much luck in this field.”

The boy knew that he wouldn’t have it easy in life. But his parents were very supportive. They were always very honest with their son and prepared him for all the difficulties. Gaten is glad that his mum and dad didn’t lie to him about his condition.

And still, despite the speech problems due to CCD, there were successes. Matarazzo regularly performed in the theatre. He himself said that acting on stage that was the most amazing feeling in the world.

My family helped me embrace my condition and feel confident. It never felt like an obstacle in my day-to-day life thanks to the people around me. I just want that to be the case for every kid growing up with CCD.

When Gaten auditioned for the role of Dustin in Stranger Things, the producers immediately decided that the condition should be written into the script. They asked the boy many questions to make sure the narrative would be believable. So in the very first episode, when Dustin is being picked on by bullies, he tells them he has CCD.

Once I got the part, they said they’re gonna incorporate that and use it in a realistic way. They asked me if it was okay if the kids in the show had bullied me because of it. I said it’s totally cool. It’s realistic.

Gaten set himself the task of raising people’s awareness of the disorder. So he was happy that the screenwriters included these details in the script. After the first season was released, the number of people who read about CCD on the internet increased by 94%. In interviews, the actor is often asked about what it was like to be growing up with this kind of condition. The young man is open to talking about it in detail. He wants other people with the same diagnosis to not be afraid of talking about it, not to be ashamed of it, and not to be afraid to show it.

Matarazzo founded CCD Smiles, a non-profit organization whose main goal is to raise funds for people with CCD and raise public awareness of the disorder. People with this diagnosis need to undergo regular operations, but insurance companies don’t cover them. So Gaten’s organization is working to open a dialogue between patients and insurance companies, trying to make sure that people are able to get qualified help with the aid of insurance.

Fans expressed support for Gaten’s endeavours. He even managed to organise a conference which was attended by 125 people with CCD. The actor said the oldest participant was an 86-year-old man who had never seen a single person with the same diagnosis in his entire life. But it’s important for people to know that they’re not alone, to be able to share their story and ask for help and support.

The actor is now 20 years old, with four dental operations behind him, but Gaten doesn’t get discouraged. He finds the strength to make jokes and support others. While many people are afraid to go to the dentist, Gaten says he’s always felt very comfortable in the orthodontist’s office.

Gaten has achieved success as an actor and actively uses his fame to help others. He notes that it’s an amazing feeling to be able to make a difference in other people’s lives through his achievements and fame.

We can only admire his fortitude and support him. We’re sure that we’ll be hearing more and more about the worthy deeds of this brave and strong young man.

What difficulties have you faced on the road to success?

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