CCD Stories

Inspiring stories from people with CCD

Gaten Matarazzo

“My experience with cleidocranial dysplasia has been pretty good, honestly. I have a very mild case of it and it hasn’t really caused me to be bullied or anything. It has benefited me in many ways because it’s basically started my acting career. It’s given me an opportunity to talk about it and not feel ashamed of it. I can still do the same things as many other kids and I can’t say the same about other people that have this condition. Thankfully my case is very mild and I can live like a normal kid but not everyone that has the condition can, and that’s why I’m talking about it, because many people are not as fortunate as I am.”


Kyle started dental procedures when he was 5 years old. He experienced several surgeries and 8+ years of orthodontics. It took 24 years to finally be done with his dental journey. We all cried tears of joy for him as he saw his new smile for the first time.

See Kyle’s Story

CCD Smiles Case Study

“CCD is so much a part of who I am that I wouldn’t be me without it. I would look different, maybe more like my family, but I wouldn’t be me. CCDSmiles has given me a whole family of people who look like me. Meeting others with CCD has been life-changing. Even though I have a relatively mild case of CCD, I still share a lot of the same struggles (dental surgeries, joint pain) with so many others. I’m thankful for my CCD family.”

– Zac

CCD Smiles Case Study

“CCD means that I have special qualities that no one else has. These qualities make me unique, so unique only 1 in a million people are like me. I accept that I am missing my collar bone, I have no teeth (yet), and I am short. This rare disorder makes me who I am today, and I appreciate that!”

– Trinity

CCD Smiles Case Study

“This little anomaly (CCD) in my genetic code has given me opportunity to empathize with others well as I have personally known the frustration of being unable to get up and ‘do’ all the things I want to do. I have a heart for those who aren’t strong and beautiful by Hollywood standards. I was usually the last one picked for the baseball team as a kid and know so well how it hurts to not be popular when you want to be. Every kid desires to be accepted by their peers, and classes are organized by age, but CCD kids are small for their age, so when I was 12 I looked 9. All of these things gave me an extra measure of gumption and an ‘I can do it!’ attitude.”

– Susan

CCD Smiles Case Study

“Having CCD makes me shorter and have teeth issues which can be hard – but it also makes me stronger.”

– Jackson

CCD Smiles Case Study

“Those with CCD are forced to face challenges head-on, beginning at a young age. We are strong because we know what we can overcome and endure. We are understanding and sympathetic from going through many physically and emotionally hard times. We are very aware of our bodies and know just how important, and precious, health is. CCD causes us to learn many life lessons in a condensed amount of time. I hope we inspire others to face their challenges, no matter how difficult they may be.”

– Holly

CCD Smiles Case Study

“I love meeting my friends I have met through CCD smiles and have visited some outside of going to CCDsmiles. I really have met friends for life there who understand my struggles with CCD. I love Kelly and Stephanie, and Gaten is my hero. I want to be just like him one day.”

– Ru

CCD Smiles Case Study

“CCD is a condition that I have. I have lots of friends now in many different states – people who I can share my experiences with. It means that I get to go through hard things that others may not, like surgeries. I feel special and different from other kids but all in a good way because when they ask me why I don’t have teeth I have a story to tell them. Another good thing is that when we get to go to NYC for all my appointments, it is always a fun experience. I am grateful that I have a beautiful smile.”

– Cassidy

CCD Smiles Case Study

“What CCD means to me is sometimes it can be a struggle, but life is a struggle, so i own it. Nobody’s perfect and anyone who says otherwise is wrong. The way I see it is, I’m no different than anyone else. I mean look at me I have CCD and I still look good so I own it. I’m not ashamed.”

– Joshua