Monday, January 24, 2011

Moebius Awareness Day

Today is Moebius Syndrome Awareness day.   Although most of you that read my blog regularly know what Moebius Syndrome is, I thought I'd give a quick  Moebius Syndrome 1.1 class.........

As stated on the Moebius Syndrome Foundation website, Moebius syndrome is a rare neurological disorder that is present at birth.  It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally (Moebius Syndrome Foundation).
As is the case with Daniel, about 30% of kids affected with Moebius Syndrome are on the Autistic spectrum (Moebius Syndrome Foundation).

Danny has other brain abnormalities which complicate things, but his outward appearance is caused by the Moebius Syndrome.   I really can't imagine him any other way, nor would I want him to be.   Is that horrible?  I just know that he has been such a huge inspiration to me and others that I think one of the biggest purposes in his life is to show people that you can be all that God intended no matter what problems you may face.
For us, I'm not sure what one thing has been the hardest part of Moebius.  I think for Danny, he might say that the surgeries have been hardest.  I think for me, the not knowing what to expect has been the hard but I think the hardest part is watching when other kids and at times adults have either made fun of Danny or whispered about him in our presence.   

So in honor of Moebius Awareness Day, wear purple and take a look at the Foundation website to read more about this condition.
http://www.moebiussyndrome.com/

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