Being born with Moebius Syndrome means that I am unable to do facial expressions. I was also born without fingers and a left foot. My parents had no idea about my condition and missing limbs till I was born… surprise! Although I do have a right foot, it didn’t form properly so when I was born it was really squint and tilted to the side. I was also born cock-eyed. Quite a list!
My early years were spent having numerous operations on my eyes and trying to straighten my foot. I got my first artificial leg when I was 2. I then went to a nursery where I was taught how to walk and how to do things for myself such as how to hold a fork so I could stuff my face. I spent time in speech therapy as I have a slight speech impairment. I also learnt how to do a slight smile which was such a huge thing for me.
Growing up with Moebius was never really an issue for me, I was never treated any different by my family and friends. I’m very fortunate to be able to say that I was never bullied and never experienced any negative comments as a child. It was more when I started to get older that I noticed the occasional stare or comment but I just try and not let it bother me.
I think where my story might be a bit different from others with Moebius is that, although I am aware that I can’t really do facial expressions, that’s not the main hurdle that I face. Don’t get me wrong, it’s hard knowing that I can’t show people how I’m feeling and I worry that people think I’m constantly in a serious mood or I seem unapproachable. But having missing limbs, especially your hands that are always on show, is always where eyes gravitate towards. I spend most of the time worrying about people staring at my hands than worrying about expressing how I feel.
Overall, life with Moebius can be a struggle but I do believe it is a state of mind to be able to see the positive in life and tackle each hurdle with a positive attitude, even if it’s easier said than done. Someone special once told me that if you start the day with positive thoughts then that should set you up for the rest of the day :) xxx
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