Moebius Voices

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

Cassie: Living with Moebius is just part of my everyday life. I sometimes have to work a little harder to show how I’m feeling since I can’t rely on facial expressions, and people sometimes make assumptions before they get to know me. But it’s simply a part of who I am and it has shaped how I communicate and made me more resilient. It doesn’t stop me from doing anything I want to do. With that being said, sometimes it’s hard and frustrating, but I’m fortunate to have amazing people in my life and the wonderful Moebius Syndrome community to help when it does get tough.

2. Sophie: When were you diagnosed, and what were your parents/family told about Moebius Syndrome?

Cassie: I was about nine months old when I was officially diagnosed. My pediatrician first thought I just had astigmatism and sent my mom and I to a children’s eye specialist. That doctor agreed about the astigmatism but suspected something more, so he referred us to a neurologist at Children’s Hospital of Pittsburgh, where we finally got the Moebius Syndrome diagnosis.

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

Cassie: I had a wonderful childhood filled with love and support. My parents always made sure I knew I was loved and cared for, and I was lucky to have friends and family who stood by me and helped me navigate life. There were challenges, kids teased me or underestimated me because of my facial difference, but those experiences helped shape me and forced me into having confidence in myself and my abilities at a young age.

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

Cassie: As I got older, the teasing and assumptions didn’t disappear, but I learned how to handle them with more confidence. I became more comfortable speaking up for myself and finding people who accepted me for who I am. I focused on my interests and education, built close friendships, and leaned on the support of my family. These years have taught me how to advocate for myself.

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

Cassie: Life is exciting and busy as I work toward my Master of Finance at Penn State, but starting fresh in a new city has made me more aware of my facial difference than I expected. Meeting new people and events like the career fair sometimes bring worries about first impressions or assumptions. I’m confident in my abilities, yet I’m still learning to navigate those moments and trust that my work speaks for itself. I am again very grateful for my support system and our community who have helped me navigate these things!

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

Cassie: I love being involved with the Moebius Syndrome community. I don’t have a formal role in the organization, but I help out whenever I can and stay connected through our Facebook and Instagram groups. Those connections mean a lot to me and let me support others even from a distance.

7. Sophie: How do you like to celebrate MSAD?

Cassie: I like to celebrate MSAD by wearing purple and sharing information about Moebius Syndrome to help raise awareness. I also enjoy connecting with our community online and seeing all the creative ways people celebrate! Everyone’s ideas and events make the day feel really special.

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

Cassie: I’d love to see awareness of Moebius Syndrome continue to grow so people understand that our disability doesn’t define us or our abilities. Too often first impressions are shaped by how I look, and I wish more people would take the time to learn and understand before making assumptions. I’m excited to see our community continue to grow and flourish, and I feel fortunate to have met so many wonderful people through it.

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

Cassie: My biggest advice is to make sure your child always knows they are loved and supported. My parents did an amazing job of that. They also helped me learn how to talk about Moebius Syndrome and explain it to others. When I was little, other kids would ask questions, usually just out of curiosity, and because my parents had me practice what to say, even when I didn’t want to or didn’t think I needed to, I didn’t feel caught off guard or embarrassed. Being honest is important too. The reality is that your child might face teasing or bullying and preparing them for how to handle those situations can make a big difference. Above all, teaching your child to advocate for themselves and surrounding them with a strong support system, including the Moebius community, is very valuable. It can sometimes feel lonely or isolating to have Moebius Syndrome, and finding friends in the community has made a big difference for me. If you are able to attend conferences, I would highly recommend it. Meeting others who truly understand what life with Moebius is like has given me lasting friendships and a sense of belonging.