Moebius Voices

1. Sophie: How are you affected by Moebius Syndrome?

Tony: I am affected by the third and seventh cranial nerves not developing in my face which prevented me from smiling and also any facial expression.

2. Sophie: When were you diagnosed, and what was known at the time about Moebius?

Tony: I was actually diagnosed with Moebius syndrome by my ophthalmologist at the age of 17. I never knew what it was before then. Then the funny thing I always remember is that he said you’ll never have wrinkles! And he was a great man, very knowledgeable.

3. Sophie: What was childhood like for you as a kid with a facial difference?

Tony: I was very lucky as a child because I grew up in the same home all through elementary school and high school, so I had a really good circle of friends. Growing up in the 60s and 70s, there wasn’t the profiling and bullying that there is today. And even today, most people say they didn’t know I could not smile. They saw me for me. However, there were those few who were bullies, and teased me and made fun of me and I always had my mom there to talk to me and comfort me at the end of some tough days. But overall, I would say I had a good childhood because some of those same friends back then, when I was 6, 7 and 8 years old, are still my friends today. It’s much different for kids with Moebius today than it was when I grew up. And my features weren’t as extreme as some others.

4. Sophie: How did you navigate adolescence and young adulthood?

Tony: During adolescence and young adulthood, I stayed true to myself. I was always involved in theater, sports and church. I never let anyone tell me I could not do something, and this was instilled in me at a young age by my mom and from the upbringing and people I grew up with outside my home.

5. Sophie: What is lifelike for you now as an adult?

Tony: Life as an adult has been great, I really can’t complain, and I think it helped when I found out I wasn’t the only person with Moebius syndrome and attended a couple of conferences. And I was able to put together a documentary about Moebius syndrome and my life growing up with MS. I think the turning point was when I saw Chelsey Thomas on TV getting the smile surgery when she was young, and then I pursued this because that’s probably the one thing that I did miss, not being able to smile. I was able to get the surgery, and it has changed my life in a lot of ways, but it never defined me, and that is what’s more important than anything. I’m married, I have two wonderful boys, 31 and 26, and I have been an educator for 26 years, and I’ve always been able to use my disability, if you will, as a platform for my special education students to know they can achieve what they want to achieve, they just have to believe in themselves.

6. Sophie: What is your involvement with the Moebius community?

Tony: I am not that involved as I used to be. I haven’t been to a conference since Florida. I do stay in touch with a few people. I put together a documentary that I am actually making some additions to which I would like to be able to put on the website once it’s completed. And I am going to be interviewing a few people who were actually a part of the original documentary from 2016.

7. Sophie: What would you describe as your best feature?

Tony: My best feature is who I am and my character, and I say that because of who I am. I think we all see the exterior quality that we like and that we don’t like and when I look in the mirror, and I look at one side of my face and the other side, I definitely can see the difference so I think, and I feel like my best feature is my heart, my character and who I am as a man, a husband and a father. And from the outside, I’m 65 and people think I’m in my 40s, so maybe having Moebius syndrome will always keep me looking young!

8. Sophie: What are your hopes for Moebius awareness in the future?

Tony: My hopes for MS awareness is that people with Moebius are not afraid to stand out and be seen and noticed. It doesn’t matter what it is, sports, a lawyer, a doctor, or an educator, don’t be afraid to be seen and don’t be afraid to tell people about Moebius syndrome. Many have never heard of it. Some of them think it’s cerebral palsy. We are all the same on the inside, and we all have a gift, talent, and we all have a genuine soul, but what happens is people close off because of Moebius syndrome, because of what's on the outside. Do you and be you. Have the attitude that people who judge you or stare have no investment in any aspect of your life. Who cares what they think is my motto.

9. Sophie: What would you say to parents whose child has recently received a diagnosis of Moebius Syndrome?

Tony: The first thing I would tell parents: educate themselves on MS and the MS community and become a part of the Moebius Syndrome Foundation group. Nowadays with Zoom, it’s a lot easier to do. The more that they educate themselves and have a support system, the better they will feel. Whatever medical care your child needs, make sure that they get it. And lastly, my mother never treated me differently. treat your kids, as if they have no disability, no MS, nothing at all. Show empathy where needed but teach them to be strong and confident in all that they do.