Awareness

Today is Moebius Syndrome Awareness Day!! Please join us and this wonderful community of families as we wear purple (anywhere!) and try to change how people see people.

This was my post on Facebook last night...

This is our daughter, Emma Hope.  She is the most enchanting, intuitive and inspiring little girl I've ever met.  She also was born with Moebius Syndrome. 

Moebius Syndrome is a very rare condition that has a range of symptoms. But maybe the most significant effect of Moebius Syndrome is that other kids often look at Emma like she is weird. When she approaches a kid or adult and says "hi!" but doesn't smile, they don't know how to respond. So they don't respond. Because of the lack of facial expression, happy or sad, people think she is slow, or does not have the same emotions. 

It can be hard to have a conversation with someone who you can't "read". She can not produce sympathetic expressions the way you would if your friend was sad. But she is so very smart, loving and sensitive!! 

Emma can not close her mouth completely to eat or when she talks. So her own name sounds like "Anna" when she says it. M, B, and P are not possible sounds! But she will patiently repeat herself until you get it. When she eats, you can see the food. She tries to use manners, but who wants to hold their hand in front of their mouth all the time. And try swallowing without closing your mouth! Really, try it now. 

Emma's tongue is also paralysed on one side and very small, so she can't lick her teeth or lips. She will face dental issues as she gets older. 

Emma's upper body is a little weaker than most. She can not open a new bottle of water, for instance. She can't swing on the monkey bars, and her balance is off so she can't jump high or run fast. But she can keep up a hula hoop like a pro!! This all might sound fairly minor, and we are thankful she does not have some of the other Moebius challenges like club feet or limb deformities. 

But if you really think about it, in this image conscious, visually stimulated, emotionally charged society that values function and health as though they are gods, well, just how difficult do you think this would be.  Friends and family are loving, supportive and encouraging.  But how about job interviews, first dates, high school, just trying to be accepted. 

And that is what Moebius Awareness Day (Fri Jan 24) is all about. We need more people to understand what Moebius Syndrome is, to learn how to relate to people who communicate more with their voices, body and action than a look. To not fear facial differences, to help us learn why they happen and so amazing people like Emma can believe that they are truly beautiful, valued and important. 

Before we encountered Moebius Syndrome, things like this made me so nervous. But now I know that it's better to try and make a connection with your foot in your mouth, than to avoid people because they look different than you. 

Please help us increase acceptance, understanding and friendliness toward people with Moebius and other facial differences. 

I posted it on my wall, tagged Scott so it was on his wall too! I also posted it on the school "Home and School" page, where many parents get the scoop on school events etc. The response was overwhelmingly positive and I am so hopeful that each year we can make a difference. Even if it is just in our community, it will surely help Emma as she gets older. She's now a celebrity!!