Cassie

Cassie’s Story

Living with Moebius Syndrome is just part of my everyday life. Sometimes I have to work a little harder to show how I’m feeling since I can’t rely on facial expressions, and people occasionally make assumptions before they get to know me. But Moebius has shaped how I communicate and made me more resilient. It doesn’t stop me from doing anything I want to do.

I was officially diagnosed when I was about nine months old at the Children’s Hospital of Pittsburgh. My pediatrician had first thought I only had astigmatism, but further testing revealed it was Moebius Syndrome.

Growing up, I was lucky to have a wonderful childhood filled with love and support. My parents always made sure I knew I was cared for, and I had friends and family who stood by me. There were challenges — kids teased me or underestimated me because of my facial difference — but those experiences taught me to be confident in myself and my abilities. As I got older, the teasing didn’t completely disappear, but I learned to handle it with more confidence, speak up for myself, and focus on my education and friendships.

Today, I’m working on my Master of Finance at Penn State. Life is exciting and busy, though starting in a new city has made me more aware of my facial difference than I expected. Meeting new people sometimes brings worries about first impressions, but I trust that my work and abilities speak for themselves.

I love being part of the Moebius Syndrome community — supporting others online, celebrating Moebius Syndrome Awareness Day, and raising awareness whenever I can. My hope is that awareness continues to grow so people understand that our disability doesn’t define us or our abilities.

To parents of newly diagnosed children, I would say this: make sure your child knows they are loved and supported and teach them to advocate for themselves. That support, along with the Moebius community, can make all the difference.