Adeline

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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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

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 -www.avikingsprayer.com 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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History of Moebius Syndrome Awareness Day
Moebius Syndrome Awareness Day is an annual event created by the Many Faces of Moebius Syndrome (MFOMS) and celebrated globally each year on January 24th — the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888. Click here to learn more.

History of Moebius Syndrome Awareness Day

History of Moebius Syndrome Awareness Day History of Moebius Syndrome Awareness Day The concept of a worldwide Moebius Syndrome Awareness Day in which people are encouraged to wear purple and…

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