Stories from the Global Moebius Syndrome Community.

Anika

Updated 12/21/2015 Anika is 14 years old and was born on Easter. She is most happy at home on the couch next to a stack of her favorite (at the…

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Ashley & Zach

My name is Ashley. When I was 21 yrs old I got pregnant with my son Zachary. My husband and I hadn't been married long in fact right after we…

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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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Ben

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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Benjamin

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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Ben Myers

In 2011, an Egyptian man by the name of Gamal Ibrahim named his firstborn daughter Facebook, after the famous social networking site. Surprisingly, this was not the result of an obsession with the web. Rather, it was an act of gratitude – Gamal wanted to honor the website for facilitating the protests of January 25, 2011 which ousted President Hosni Mubarak.

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Bob

Recently i paid a visit to Tims website and had a good read as well as watching the video, after seeing and reading through his website i am so thankfull…

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Bradley

I will never forget the morning that Bradley was born. I was at my sister-in-law's house having Christmas dinner with family on Christmas night when I went into labor. The…

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Brianna Brockner

Brianna was a beautiful baby who brought joy to everyone who had the pleasure of knowing her.  Unfortunately, Brianna passed away when she was just 14 months old.   Brianna still accomplished much in her short life. She was on her way to sitting unassisted, could do ten signs and knew lots of other words, played with her toys, turned pages in books, rolled over from her back to her tummy, played with her toes, and was very smart. She learned something new every day and made everyone around her very happy. Her life was full of love and she is greatly missed every day.  We hope you’ll take a moment to read about her life and learn a little more about Moebius Syndrome.

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Brooklyn

Brooklyn Clarke
11/29/07- 6/14/08

Hello everyone, my name is Lucy, I am Brooklyn’s mommy.

When I found out I was pregnant with my little Bee, I was overjoyed, but as my pregnancy progressed, things started to get a little scary for me. During my 6 month ultrasound, the tech started acting very suspiciously, and said “I will get the doctor to come in and speak with you” and practically ran out of the room crying. I was terrified, and after the doctor came in to speak with me, was not any less worried. They had found fluid build up in Brooklyn’s kidneys, and that she had a clubfoot. This being my first pregnancy, I rushed home and did hours of research, only to be reassured that at least her foot was something that could be corrected.

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