Written by Sandy Goodwick, this letter introducing teachers to
Moebius Syndrome has much to teach about all medical differences.
I'm giving you this because I want you to understand more about me. You'll see I am just like everybody else in your class in lots of ways, but in some ways, I'm not the same. I need you to know how I am "different" from the other kids in our class so you can help make school a safe place for me.
I have Moebius syndrome, which means that I have a paralyzed face. I was born unable to smile, close my eyes completely, blink, frown or show anyfacial expression. I do not have the 6th and 7th cranial nerves which control blinking, the sideways movement of my eyes, and facial expression. Believe me, I would much rather have been born with something else because it really hurts at times to have this! Maybe the hardest part about Moebius is that it is so rare and nobody (except for other people with Moebius) really know what it's like to have. Besides the facial paralysis, people with Moebius can be affected in other ways - speech difficulties, webbed fingers (syndactyly), missing or malformed limbs, club feet and Asperger syndrome.
The hardest part about having a disability
is when one is teased, looked 'down' upon, or thought to be "weird" or
different. I often feel embarrassed about having Moebius, and I'm
not sure how to handle this. I need you to understand how important
you are in helping me to be the best I can be! I have all the same
feelings, needs and emotions as anyone else - I just can't show it on my
face. Help me to use my voice and body language so
These are some of the things I have trouble with, in having Moebius...
I am not the only child in the world with
Moebius. There aren't millions of us, but there are a growing number
of people we have found who live all over the world! We have started
MANY organizations all over the world (including Australia, Canada, United
States, United Kingdom, France, Peru, Germany,
I'd love to tell you that I am this perfect child (except for the Moebius part) but my family will tell you right away that I fool around just like anybody else! I guess I'm really pretty normal!
Thanks for reading this and learning something very important about me. I think you'll soon find out there's a lot more to me than just Moebius syndrome!"
Check out stories from children
and teens with Moebius
Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468
Last updated: November 14, 2004