Stories from the Global Moebius Syndrome Community.


DONATE NOW From the day she was born she has fought to overcome so many difficulties and obstacles. This outspoken, fun, smart and remarkable 8 year old has taught us…

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Moebius Syndrome - Adeline

Moebius SyndromeMoebius Syndrome – Adeline

Adeline, and her twin sister Eliza, were born on July 1, 2014, in Portland, Oregon. Having twins was a complete shock to her father and me! My pregnancy was very healthy, but there was some time when Adeline was not showing the amount of expected growth, and so the doctors diagnosed Intrauterine Growth Restriction. She was always smaller and less active than her sister Eliza. The girls were born at 37.5 weeks. Adeline was 5 pounds, 2 ounces, and Eliza was 7 pounds, 4 ounces.


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Hi guys! My name is Alayna and I’m a 24 year-old from Iowa! I joined this group in April and I now realize that I had never introduced myself. I…

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Alex Barker – Moebius Syndrome

Alex Barker – Moebius Syndrome: People ask me all the time about my experiences of having a rare condition. I always answer that I’m fairly happy as I am. It’s the truth.

Who wouldn’t want to be born without a disability? Me…I didn’t have a choice. Everything or mostly everything that I’ve wanted to do is because I saw my peers doing the same thing and I though…Hey I could do that. I went off to college, university and had the opportunity to go and study in different countries. I even live independently. Well all my friends do so why can’t I?


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Moebius Syndrome – Aiden

Moebius Syndrome – Aiden: I’m 28, from Co. Kerry, Ireland and have had Moebius Syndrone since birth. Because of Moebius Syndrome, I cannot smile or move my eyes, my left hand is deformed and I had to have numerous operations on my feet as a child due to having clubbed feet. I did not let my disability deter me, however. I have gone to college and completed numerous home study courses, obtaining dilplomas of distinction in creative writing, freelance journalism and writing for TV & Radio. Two years ago I released a book of poetry entitled, A Viking’s Prayer and later this year, I will have my young adult fantasy novel, The Zargothian Tales (working title) published by an American publisher. 


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Moebius Syndrome - Alexis Moebius Syndrome - Alexis: Alexis rubi was born on 7/30/06. She was 6 weeks premature and weighed 6 lbs 4 oz and was 18 1/2 in…

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Moebius Syndrome – Allison Steward

Moebius Syndrome -Hello my name is Becky and I have a thirteen year old little girl who was born with Moebius Syndrome.

When she was born we had no idea she was going to have any problems. We live in a small town with a tiny hospital. After my delivery the nurses knew something was wrong and held up a blanket so I couldn’t see her. My mother told me later that she looked as if someone had hit her with a baseball bat on the side of her head.


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