Stories from the Global Moebius Syndrome Community.


Moebius Syndrome - Amelea Moebius Syndrome - Amelea is 7, she was diagnosed with Moebius at 14 months old...she was born with crossed eyes, very minimal facial movement, and couldn't…

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I was born on the 5th of december 1984, i was in hospital for a couple of months and i was dignoised with having moebius syndrome, i also had to…

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Amy Schuster

Moebius Syndrome: Amy Schuster My name is Amy Schuster. I was born on January 5th, 1993 in Hilton Head, South Carolina. I moved to Colorado when I was 2 and…

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Andrea Smith

Moebius Syndrome: Andrea Smith Moebius Syndrome - I am Andrea Smith and I am excited to be in the role of Executive Director for Many Faces of Moebius Syndrome. I…

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Moebius Syndrome - Anika Updated 12/21/2015 Moebius Syndrome - Anika is 14 years old and was born on Easter. She is most happy at home on the couch next to…

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Anita Fuentes

Moebius Syndrome - Anita Fuentes Moebius Syndrome - Hi, I’m Anita and I’m from Brisbane, Australia. I have a mild case of Moebius Syndrome. Put simply, my main symptoms are…

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Ashley & Zach

Moebius Syndrome - Zach Moebius Syndrome - My name is Ashley. When I was 21 yrs old I got pregnant with my son Zachary. My husband and I hadn't been…

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Austin Halls

Hi my name is Austin Halls and I live in New Jersey. I am 14 years old. I have Moebius Syndrome. My life never has a dull moment. When I…

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My 2nd pregnancy was uneventful, boring & long and when Ben finally put in an appearance 7 days late on 25th June 2005 everything seemed perfectly normal. A passing doctor remarked that he “looked a bit squished” and at the time I remember thinking that anyone would look a bit squished if they had just made the same journey!!


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My son Benjamin, born Sept. 30th 2006, was diagnosed with Moebius at around two weeks of age. It has been a long road but so worth it. Benjamin is such a joy and blessing to our lives. He has also been diagnosed with another syndrome call VACTERL.


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