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Moebius Syndrome Awareness Day

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FC: Moebius Syndrome Awareness Day January 24, 2014

1: Hi! My name is Charlotte Teagan. I was born on November 20, 2012. When the doctors and nurses first 'met’ me, they immediately knew that I was different than most new baby boys and girls.

3: When I was first born, I was unable to suck very well, so I drank milk through a small tube in my nose.

5: Even though I am different, my older sisters, Madeline and Lillian, immediately fell in love with me. Don't I have great big sisters? They even made pictures to decorate my crib while I was at the hospital!

7: It took doctors a very long time to figure out why I am different than other babies. I have Moebius Syndrome. Moebius Syndrome is extremely rare. You may never meet someone else like me.

9: I was born with club feet. That means that my feet bent the wrong way. Doctors fixed my feet using casts (like when someone breaks an arm or leg) and braces. I still wear braces to sleep every night and I will wear them until I turn 2.

11: When I was 2 months old, doctors told my parents that I have hearing loss. That means I can’t hear sounds and voices as well as you can. When I was 3 months old I received very small hearing aides to help me hear better. But even with the hearing aides it doesn’t mean that I hear the same way you do.

13: Because of Moebius, I am unable to smile. Even though I am a very happy baby, I can’t always show you. I will laugh if you do something funny but I can only smile on the inside. Because I have difficulty moving my cheeks and mouth, it is also harder for me to chew foods. It may be difficult for me to make certain sounds but don't worry, I'm working with a special therapist to make sure I can speak clearly when I grow up.

15: Sometimes my eyes look like they are crossed. I cannot move my eyes from side to side. So if I want to watch something off to the side, I need to turn my head. I also can’t blink, so bright lights can hurt my eyes. But I am very lucky because I can close my eyes to go to sleep.

17: Because I have Moebius Syndrome, my muscles aren’t as strong as they should be. I just turned 14 months old. While other babies my age are crawling and walking, I just recently learned to sit up all on my own without falling over. Aren't you proud of me? I have been working very hard with another therapist to help me gain strength.

19: Despite these differences, I am like you in many ways. I laugh, play, learn, and love my family and friends. I am working hard to get stronger and show you my true personality!

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  • By: Kristin M.
  • Joined: almost 6 years ago
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  • Title: Moebius Syndrome Awareness Day
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  • Published: almost 6 years ago