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12.11.2015


Even though I wore undergarments, I felt naked in front of this older man with the bushy mustache and thick glasses. He told me to stand up and bend down and reach for my toes as he examined my back for scoliosis.
I covered my deformed right hand, which looked like a puppy's paw, with my left hand and looked down at the floor.
People with Moebius can't do things like smile, blink, raise their eyebrows, or pucker their lips.
I also have a club foot and webbed toes.I couldn't be breast fed when I was a baby because I wasn't able to suck properly. Even when I was a baby, I didn't let Moebius hold me back.As I grew up, the name-calling was brutal. Kids called me names like "Captain Hook" and "One-Handed Bandit." They would also tell me to smile and then laugh when I couldn't do it.
I was a stubborn, determined child, insisting I could do everything the other kids could do.
I learned how to rollerblade, even though my balance wasn't that good because of my club foot. That's how I showed people I was happy, through giggles and gleaming eyes instead of grins.


When I was 10 years old, my family heard about a girl in California who had the very first smile surgery.
To my shock and displeasure, the medicine was only a sedative and didn't numb my face at all. I did have some nerve in my face and felt a sharp prick as the needle was shoved in near my jaw. I was deathly afraid of needles before, and after that experience, I wanted nothing more to do with the smile surgery.A few years went by and as I matured, I decided to revisit the idea of having the smile surgery. When I was 15 years old, I flew to California and a well-known doctor performed my surgery. A blood clot developed in my face, and I was rushed into emergency surgery because the swelling was about to block my breathing passage. It took a month or two for the nerve and muscle to start working, so after my surgeries my family and I anxiously awaited my first smile. When I stood face to face with my aunt and smiled at her for the first time, she smiled back and asked me why I was staring at her. She was so used to naturally smiling back at people that it took her a few seconds to realize what was happening.
I still get a thrill when I'm walking down the street and someone passes by and smiles at me, and I'm able to smile back.


August 8 2015 Official 2015 Moebius Syndrome Awareness Day Page Our 2014-2015 Moebiuis Syndrome Family Holiday HeroesGallery 2 Moebius Syndrome Awareness Day 2015 Video Gallery Smiling with our Hearts upon the World! I covered my deformed right hand, which looked like a puppy's paw, with my left hand and looked down at the floor.
People with Moebius can't do things like smile, blink, raise their eyebrows, or pucker their lips.
I learned how to rollerblade, even though my balance wasn't that good because of my club foot. That's how I showed people I was happy, through giggles and gleaming eyes instead of grins.
To my shock and displeasure, the medicine was only a sedative and didn't numb my face at all.
Tears streamed from my grandfather's gentle eyes when I smiled at him for the first time.



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