30 Stories 30 Faces 30 Years: Emerald Demor

"To me, CCA means hope. It’s a chance for worried children and parents to see real-life success stories. It’s chance to meet others who understand some of the special circumstances we live through. It’s a chance to feel just like every other person in the room. Yes, we’re all different but we’re all drawn together in one massive family that welcomes others with open arms and smiling faces."


                                                        -Emerald Demor, CCA Adult


Editor's Note: Emerald is such a light. She is truly caring and loving. Emerald listens and takes the world in carefully and kindly. I always enjoy the time I spend with her at our Annual Family Retreat and Educational Symposium. For the longest time I thought she was from Texas, but in fact she hails from Cleveland, Ohio. She works as an Information Technology Project Coordinator at Hinkley Lighting. She enjoys reading, playing board and video games. She completes the occasional home improvement project project, too. Emerald has two dogs that she loves with her entire heart. That said, family is always first in her book and loves spending time with her parents, nieces, nephews, and friends. In this essay, in her own words, she tells us what CCA has meant to her and what it means to live with a facial difference. Emerald, we are grateful you are part of our community. Thanks for being such a strong power of example for our kids and new parents.

By Emerald Demor
My name is Emerald. I have Crouzon Syndrome. I'm 24 years old. My first CCA retreat was in 2003, when I was 8 years old. Since then, I’ve gone to as many as I’ve been able. Every year [Retreat] is full of moments that change the way I view myself and the world.

To me, CCA means hope. It’s a chance for worried children and parents to see real-life success stories. It’s chance to meet others who understand some of the special circumstances we live through. It’s a chance to feel just like every other person in the room. Yes, we’re all different, but we’re all drawn together in one massive family that welcomes others with open arms and smiling faces.

I love that I’m able to be a role model and an example of success. I want to give hope to parents and kids that having a craniofacial condition doesn’t have to be a limit. I’m constantly pushing myself to do things that challenge me. Even if I don’t succeed, I’m able to bounce back and find another way to accomplish my goals. CCA allows us all to celebrate these successes.

I also get to see examples of what my future holds. At CCA, I see people with great careers, spouses, and families. I see people following their passion in hundreds of different ways and it normalizes everything for me. It shows that even though we have craniofacial differences, that doesn’t mean we all need to follow one path.

CCA is about sharing our successes and blazing trails for each other. It’s about helping each other and sharing common experiences. Of course, we help each other through sadness and fear, but we always return to the good. CCA is a source of positivity and light that we all need.

Being born with a facial difference has forced me to be tougher. I had no choice, but to fight to survive when I was young and that's transferred over well into the rest of my life. It's shown me how strong I am. Even though it might not be easy, I can accomplish anything if I work hard enough. Having a facial difference has also made me kind. I know what it's like to experience bullying and unfair treatment. The only way I know how to overcome this is by being kind to others to try and negate the negative energy in the world. I'll do my best to always create a welcoming environment and be a friend to anyone who needs it.