MAPLETON — A year ago, as she anticipated the knock on her front door, Kelly Wosnik wasn’t at all sure how it would go when she met a genuine TV star.
She was a nurse practitioner who runs her own clinic in Utah County. He was teenager Gaten Matarazzo from New Jersey, one of the stars of the Netflix sensation, “Stranger Things.”
The one thing they knew they had in common was they had both been born with a rare birth defect called cleidocranial dysplasia, CCD for short.
CCD is a bone disorder. Those born with it do not have collarbones and experience difficulties with bone development, particularly with their teeth, requiring multiple dental procedures throughout childhood. Wosnik had surgeries from the age of 7 to 19, none of them minor. Gaten was, and is, in the middle of his surgeries.
CCD was the reason they were meeting. Gaten’s parents, Heather and Gaten Sr., had heard about a nurse practitioner in Utah who had plans to start an organization aimed at helping those with CCD. They had flown from New Jersey to Utah with their famous son, who was ready and willing to meet the doctor and become the face of the foundation.
“I wondered what a 14-year-old would see in a 41-year-old,” says Wosnik.
“Then I opened the door and it was an instant connection. He saw me and just hugged me. And when I finally let go, he didn’t.”
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That initial meeting was a year ago, during Presidents Day weekend, 2017.
Wosnik and Gaten sat down with Emmett Furrow, a comedian from North Carolina whose act includes doing body contortions without a collarbone, Steffani Stubbs and others, and they quickly got busy dotting i’s and crossing t’s to get the foundation CCD Smiles (ccdsmiles.org) up and running.
Then they all stepped back to see what star power can do for a good cause.
“Stranger Things” is a supernatural science fiction-horror show that requires plenty of suspended reality. But when it came to Gaten’s part — he plays a likeable kid who provides comic relief named Dustin Henderson — the directors kept it real, incorporating Gaten’s real-life CCD into the plot.
As he flashes his toothless grin and shows off his lack of a clavicle to his friends, he explains about his birth defect and talks about how it has made him a target for bullies.
Just like that, a condition that affects just one person in a million vaulted into the mainstream’s consciousness.
It’s nigh on to impossible to calculate the attention Gaten — who has 7.8 million followers on Instagram — has brought to CCD.
“He wants to do anything he can to help,” says Wosnik. “He’s wise beyond his years. He’s very empathetic.”
Last month, Gaten and Wosnik appeared on the ABC television show, “The Doctors,” to talk about CCD Smiles. At last count, the YouTube clip of their appearance had exceeded 2.3 million hits.
For Wosnik, who had never met anyone else with CCD until she was 33, this explosion of awareness is almost not to be believed.
One of five siblings born in California to a farmworker dad and a substitute teacher mom, she was the only one with CCD. She grew up enduring those multiple oral surgeries — most of them not covered by insurance — along with more than her share of bullying. Among the taunts, she remembers a teacher calling her “Toothless.”
“Teeth are a big deal,” says Wosnik. To a teenager especially.
“You feel so isolated, so alone. So you lose confidence.”
She decided to study medicine in college to better understand her CCD. She did her master’s thesis on CCD, then went on to obtain a doctorate in nursing practice.
She’s been working as a nurse practitioner ever since, all the while never losing sight of her dream to establish a network to help others with CCD.
“If nothing else, I wanted to provide a way for people with CCD to connect with each other,” she says. “That kind of therapy is so important — just knowing you’re not alone. I’d have given anything for that connection.”
The bigger goal, says Wosnik, is to pay for dental surgeries some people couldn’t otherwise afford.Comment on this story
For its first project, the foundation is helping a 30-year-old Clearfield woman get the long overdue dental help she needs. When the work is complete in March, they plan to post the video of her new smile on the website.
Wosnik hopes it’s just the beginning. “At one in a million, we really could help every single person with CCD,” she smiles.
She marvels at all that’s happened in just a single year, at all the exposure and fundraising, at the small-but-important CCD community they’ve been able to establish.
She’s learned that with CCD people there’s an instant bond. From the moment you first meet, you feel like you’ve known each other forever.