LINDSAY: “We were out trick-or-treating on Halloween, and partway through the night, with only half a bag of candy, Parker looked up and me and said, ‘My legs hurt too bad. I want to go home.
He’d been complaining about pain for a while, but that was when we knew it was really serious, like a four-year-old turning down candy serious. But, for all the testing we’d done, we still didn’t have any answers — until one night we were watching Stranger Things, and Gaten Matarazzo’s character is being bullied, and he says right there in the show, ‘It’s called cleidocranial dysostosis!’
My husband went straight to Wikipedia. He realized that the character had this rare genetic bone condition because the actor had the condition, and Parker looked a little like Gaten... We might never have gotten the diagnosis if not for that show. I think that’s really shown us the power of representation and advocacy.”
“It’s okay to be a little bit different. Like, I’m double-jointed, and I can bend my finger all the way back and, because I don’t have a collarbone, I can touch my shoulders together and that’s pretty epic.” - Parker
PARKER: “I made a video for my class to show what it’s like to have CCD and so they understand that it’s okay to be different. People ask me questions a lot like why I’m shorter or why I have to take breaks in gym class. I don’t like it sometimes because I’m sensitive about my height, but it’s better when people know and understand. It’s okay to be a little bit different. Like, I’m double-jointed, and I can bend my finger all the way back and, because I don’t have a collarbone, I can touch my shoulders together and that’s pretty epic.”
LINDSAY: “I'm a teacher, so I see how kids behave around other children, and how differences make people feel uncomfortable. That’s why I think it’s so important for Parker to show off the things he can do and the things he has accomplished, especially when they’re more difficult for him. The videos and the openness are sort of our own version of the awareness effort that Gaten made on Stranger Things. I’ve really wanted to instill in Parker the confidence to tell people, ‘You might notice this is different, but let me explain to you why.’”
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