Letter to Teacher About Moebius
Written by Sandy Goodwick, this letter introducing teachers to
Moebius Syndrome has much to teach about all medical differences.

"Dear Teacher:

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
that people can read my feelings through them.

These are some of the things I have trouble with, in having Moebius...

  • My face always looks the same, no matter HOW happy or sad I am.
  • I sometimes feel really awkward when pictures are taken, because I can't smile.
  • Because Moebius is so rare, I feel very alone and different at times.
  • When I eat, I can't shut my mouth completely so food might collect on my teeth.
  • I can't shut my eyes like other people so I roll them back in my head.
  • My speech may not be as clear as other kids' speech, and my face looks different when I speak.
  • Kids may look at me funny or tease me because I look different.  It can hurt so much!
  • Sometimes people may think I am dumb or not interested because I don't show facial expression.
  • Sometimes I can't catch balls very well because my eyes don't move from side to side.
Maybe it would really help if  we ALL learned about other people who have disabilities - not just Moebius, but things that other kids have, like cerebral palsy or learning disabilities.  People with these conditions are regular people, just like all of us here in our class.  EVERYONE wants to be treated fairly, don't you think?

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,
Holland, Italy, and Spain) for people with Moebius syndrome - go to www.moebiussyndrome.org or www.moebius1.org to learn more about Moebius syndrome.

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!" 

Write to Sandy
Sandy's story

Check out stories from children and teens with Moebius
(Natalie, Kraig, Robyn, and Kristina)...all from the site map

To the frog ponds
Other resources 
To the site map

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004