💜 Tony’s Story: “Staying True to Myself”

My name is Tony, and I was born with Moebius Syndrome, which affects the third and seventh cranial nerves in my face. Because of that, I couldn’t smile or make facial expressions growing up. I wasn’t diagnosed until I was 17, when my ophthalmologist — a great man and very knowledgeable — told me what it was. I still remember him saying, “You’ll never have wrinkles!” It’s something I’ll never forget.

I was lucky as a child. I grew up in the same home, went to the same schools, and had a great circle of friends. Growing up in the 60s and 70s, things were a little different — people saw me for who I was. Most didn’t even realize I couldn’t smile. Of course, there were a few bullies, but I always had my mom to talk to at the end of the day, and she gave me comfort and strength. Some of those childhood friends are still part of my life today. My features weren’t as extreme as some others with Moebius, but I know it’s much harder for kids today.

Through adolescence and young adulthood, I stayed true to myself. I was always involved in theater, sports, and church. My mom raised me to believe that I could do anything I set my mind to, and I never let anyone tell me otherwise.

Life as an adult has been great. Things really changed when I realized I wasn’t the only person with Moebius Syndrome. Attending conferences helped me connect with others, and I even put together a documentary about my life growing up with Moebius. One of the biggest turning points for me was seeing Chelsey Thomas on TV as a child receiving the smile surgery. I decided to pursue it myself, and it changed my life in many ways — but Moebius never defined who I am.

Today, I’m married, with two wonderful sons, now 31 and 26. I’ve been an educator for 26 years, and I use my story to show my students — especially those in special education — that they can achieve whatever they dream of. You just have to believe in yourself.

I’m not as active in the Moebius community as I once was, but I’m working on expanding my original 2016 documentary and reconnecting with some of the people who were part of it. I hope to share the updated version soon.

When I think about my best feature, it isn’t my face — it’s my heart, my character, and who I am as a man, husband, and father. I’ve always believed we should focus on who we are on the inside. And if I’m being honest, one perk of Moebius Syndrome is that at 65, people think I’m in my 40s — maybe it keeps me looking young!

My hope for the future is that people with Moebius Syndrome won’t be afraid to stand out, be seen, and share their stories. Whether you’re an athlete, a doctor, a teacher, or anyone else — don’t hide. People may not understand at first, but you can help change that. We all have gifts, and we all have worth. My motto has always been: “Who cares what they think.”

To parents of children recently diagnosed with Moebius Syndrome — educate yourselves and get involved in the community. The more you learn and connect, the more confident you’ll feel. Make sure your child gets the care they need, but don’t treat them as if they’re different. My mom never did. Show empathy where needed, but teach them to be strong, confident, and proud of who they are.