‘Stranger Things’ star Gaten Matarazzo stops by Utah event for children with cleft and craniofacial conditions

HEBER, Utah (ABC4) — Two Utah-based organizations partnered together to hold the Cleft and Craniofacial Family Retreat in Heber, Utah, on Saturday, Sept. 14, and “Stranger Things” actor — and nonprofit co-founder — Gaten Matarazzo was at the event.

The Heber retreat was hosted by Provo-based Utah Smiles Foundation and Orem-based nonprofit CCD Smiles. In 2017, Matarazzo’s father reached out to Dr. Kelly Wosnik of Mapleton, Utah, and CCD Smiles became a full-fledged nonprofit.

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Dr. Devan Griner, president of the Utah Smiles Foundation, told ABC4.com that the retreat was a day for kids with craniofacial conditions and their families to have fun and not worry about other things.

“In Utah, we have more than just about anywhere else,” Griner said, referring to craniofacial abnormalities. “One in 500 kids is gonna be born with a cleft, one in 1500 is gonna be born with a condition where their growth plates in their head are fused at birth….”

Griner said he hoped the retreat was a day when the kids “didn’t care that they had a cleft or any craniofacial condition.”

Utah Smiles Foundation addresses a wide variety of cleft and craniofacial abnormalities, while CCD Smiles specializes in research and outreach regarding cleidocranial dysplasia (CCD) — a condition both Wosnik and Matarazzo have.

“CCD is just a rare genetic birth defect that affects the way the bones form, and the way the bones remodel over time,” Wosnik said.

Matarazzo said the organization is giving kids opportunities that he and Wosnik didn’t have growing up, including making friends who can better understand their situation while dealing with similar conditions.

“So much of the work that we’ve been doing focuses on the treatments that people have to go through, and it can be really really hard — but this is always a really really fun reminder that the community and the family around it can make it so much better, and I’m so grateful to have these people,” Matarazzo said.

Griner said a lot of children can suffer from “surgical PTSD” because of how many appointments and surgeries they have. There are “critical ages” where Griner said avoiding surgery is the recommended course of action.

“We try to do a lot of things to try to help these kids have a reason to smile, not just the ability to smile,” Griner said.

Matarazzo said research and outreach have helped show that more people have CCD than originally thought, adding that “everyone has a community somewhere.”

“These kids that have gone through hard things and really earned their smiles — they have the biggest hearts,” Wosnik said.

“And the biggest smiles,” Matarazzo added. “They worked hard on them.”

Anneka Johns’ full interview with Gaten Matarazzo and Dr. Kelly Wosnik can be viewed below:

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