Tonight I put a post on the parent Facebook group for Emma's school, like last year.  It went something like this...

This is Emma Hope.  Emma is in first grade and would like me to tell you about Moebius Syndrome, the very rare condition she was born with, as this Saturday is Moebius Syndrome Awareness Day.

Moebius Syndrome primarily affects the nerve function in the face.  This means that Emma is unable to make facial expressions with the upper portion of her face, like frowning, smiling or winking.  While her jaw and lower lip do move, she is unable to close her mouth when eating, or make true "m", "b" or "p" sounds.  Emma also has no lateral eye movement (left to right) and does not blink, so it can appear as though she is staring, which we are taught is "rude", but she can not help.

Emma says that people often think she is crying when she is laughing because "they can't see on the outside what she feels on the inside".

Other children may be unsure about what makes Emma look "different", and often stare, or even call her "weird".  And this is why we have Moebius Syndrome Awareness Day.  

People with Moebius Syndrome, and many disabilities, are not usually mentally impaired, and so they are acutely aware of the reactions of people around them.  This goes for many people with physical disabilities or facial deformities (like acne, burns or scars).

Please help us to educate and show children that everyone is unique, and rather than avoid discussing someone they might see in public, let them know that they are a person with feelings, a family and quite possibly share interests with them!  Most people I have met with special needs, congenital or otherwise, would rather you come over and say "hi" and than avoid them.

Please feel free to contact me if you have any questions about Emma, Moebius Syndrome or great ways to start the conversation.

Thank you for reading.

~ the response was really positive, and lots of parents saying how much their child loves Emma or had fun playing with her at the pool in the summer.  I think they may be exaggerating in some cases, but my goal was to raise awareness not to get Emma a bunch of friends!

I did get one message from a mom whose daughter did the soccer camp with em, but is in the grade below her.  She told her mom that Emma is always too busy to notice her at school!  I had to chuckle.