“Stranger Things” star Gaten Matarazzo and a Utah nurse have joined forces to help people who share their rare birth defect, cleidocranial dysplasia.
Kelly Wosnik, a BYU alumna and nurse practitioner, is one of the few people with the genetic disorder cleidocranial dysplasia. Cleidocranial dysplasia is a condition affecting bone and teeth development and usually results in individuals having underdeveloped collarbones or no collarbones at all.
“It’s one in a million,” Wosnik said.
Because of the rarity of this condition, Wosnik didn’t meet anyone else with cleidocranial dysplasia until she was 33 years old.
“There was that sense of loneliness, kind of a feeling of being the only one in the world and not understood,” Wosnik said.
Wosnik said many times growing up she would go to the doctor and feel like a “lab rat.”
“Without collarbones, you can touch your shoulders together, so that always got a lot of people’s attention. Doctors would bring their office staff in and say, ‘Come here and see what Kelly can do with her shoulders,'” Wosnik said.
Wosnik said although the surgeries involved with the condition were difficult, the emotional part was much harder.
“Surgeries that involve your face … you can’t hide them, and people comment on how you look, or kids bully,” Wosnik said. “That was probably the hardest part.”
Wosnik thought about starting an organization nine years ago when she first met someone else with cleidocranial dysplasia, Steffani Stubbs.
“Once I connected with that one person it changed my life because I no longer felt alone. I no longer felt like no one understood,” Wosnik said.
Because of this experience, Wosnik wanted others with cleidocranial dysplasia to connect with those who share their condition, educate them, help them find specialists and raise money for medical costs.
Wosnik worked on her foundation, CCD Smiles, for over five years, but kept meeting roadblocks until she met Gaten Matarazzo, who plays Dustin on the hit show “Stranger Things.”
Wosnik met Matarazzo through Emmett Furrow, a comedian with cleidocranial dysplasia. According to Furrow, Matarazzo’s father found him through a web search when Matarazzo was a baby and had been keeping Furrow updated on Matarazzo’s progress throughout the years. Furrow knew Wosnik wanted to start a charity, so he introduced the two.
“Kelly wanted to start an organization. Gaten wanted to find an organization. So basically I was kind of a bridge to introduce the two of them to each other and stand out of the way,” Furrow said. “After ‘Stranger Things’ kind of exploded, Gaten just took it upon himself because he’s just that kind of a guy; he wanted to raise money to help other kids with CCD that didn’t have the opportunity he had to get it taken care of.”
Matarazzo’s involvement has been a huge blessing to help bring awareness to the organization, according to Wosnik.
“He’s been really open as cleidocranial dysplasia affected his ability to get roles, because when you are a 15-year-old in Hollywood it is important to look the part, and teeth are important,” Wosnik said.
According to Wosnik, Matarazzo is currently going through surgeries to “get his teeth.”
“On all of his interviews and things like that, any chance he gets, he’ll talk about CCD and CCD Smiles,” Wosnik said. “So he brings a lot of awareness.”
One of CCD Smiles’ goals is to help people with CCD get their smiles. Wosnik wanted to help someone with cleidocranial dysplasia achieve this before the organization was even a year old.
The first person CCD Smiles helped was a woman in her 30s whose oral surgeries in her early years had been done too quickly. As a result, she had to have the majority of her teeth pulled at age 18 and was left with only a top denture, as the bottom one never fit properly, according to Wosnik. CCD Smiles helped her get the implants she needed.
Stubbs, who is on the foundation’s team, values the work CCD Smiles does.
“We need our teeth, but beyond the smile part, the biggest part is bringing people together … and to see a light go on in them that they haven’t had before, that they know they aren’t alone,” Stubbs said.
Watch this CCD Smiles video below to hear Matarazzo and others share their stories. More information about CCD Smiles can be found online.