Jessica when she was 10
Jessica wrote this for a school report when she was 10 years old. This was around the time when she started opening up about having Moebius - Mom
Know how sometimes you get the feeling that you can’t do something your friends or classmates can do? I feel that way every day because I can’t smile. Let me explain.
I was born with Moebius Syndrome which was caused by a loss of blood when I was a developing baby. That loss of blood caused the nerves for my face to form the wrong way, and because of it, I cannot smile or move my lower lip very well. When you’re a teenager, or a grown up, you can’t get Moebius Syndrome, you have to be born with it. When you are born with Moebius Syndrome you could have one or more of the following features: clubbed feet, missing fingers and/or toes, crossed eyes, and you cannot smile.
Moebius Syndrome affects me by the way I talk and smile. Because the nerves in my jaw and lower lip do not work well, I have a hard time making “P” and “B” sounds and I cannot move the corners of my mouth to smile. Some Moebius kids cannot feed at a young age and never develop physically. Thankfully I can be physically active in sports like basketball, soccer, and karate.
I also express my emotions differently than other people: because my face is stiff, you might think I have no emotions. Although you can’t see it on my face, I DO have intense emotions inside when I am under stress, such as when I’m taking a hard test or when people laugh at me. But, while Moebius Syndrome may stop me from physically showing my emotions, it does NOT stop me from being pretty.
I am special, not just because I can’t smile, but because I am rare. I am nearly one in a million because Wikipedia estimates there are only 2-20 cases of Moebius Syndrome per million births. In fact, you may never meet another person with Moebius in your entire lifetime. Although I am very unique, I’ve met other children with Moebius, just like me. My friends Dominique and Elizabeth support me because I can talk to them about my feelings and they will understand. I can trust them not to blab to other people about my secrets and personal feelings, and I know they would never make fun of me because they are my mirror image.
I hope you enjoyed my presentation, but I have one small request to ask… Please don’t laugh if you see me or my other Moebius friends, just think: “she is a little bit different, but she can feel as happy from a compliment or just as wounded from harsh words as anyone else.”
Jessica / January 10th 2014