The winter of 2008 was definitely a season of change. I had just gone through a bad break up with the girl who I'd thought I'd be spending the rest of my life with. I had to move to another city and start my life over again. This time around I knew I wanted to do things differently. I wanted to do something to make a positive difference.

 

I'm not sure if I chose Moebius or if it chose me. When I was a kid my parents didn't know what my condition was. They didn't have any support other than the immediate family. They gave everything to taking care of me. When cancer came knocking on their door, they continued to put me first and they were both gone before I was 16. I always knew I wanted to do something to pay them back for all they did for me. I didn't find out I had Moebius syndrome until my ex figured it out looking through old medical records. I didn't say it out loud, but as soon as I found out what I had I knew at some point in the future I wanted to get more involved. Maybe I could give back to my parents that way. In the late winter, early spring of 2008 I started talking to Katie Pennycate a Moebius Mom who had recently lost her daughter to complication from Moebius. Shortly after we met in person at her daughter Hannah's gravesite. As I was kneeling down in front of it. I asked God why I was spared, and Hannah wasn't? The Doctors told my parents many times that I would not live to see puberty. It was then that I understood what I wanted to do to make a difference.  (The photos of that first visit were lost. The photos below were taken in 2010)

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That event and everything to follow were the building blocks for us creating the global online Moebius Syndrome Community, the Many Faces of Moebius Syndrome, and Moebius Syndrome Awareness Day. It wasn't something I did alone. It was something our entire community did together as we grew, and I thank each and every one of you for it.

-Tim Smith