Stories from the Global Moebius Syndrome Community.

Addison

Moebius SyndromeAddison was born on December 4, 2014 in Long Island, New York. After Addison was born, she was whisked away to the NICU. Addison spent most of her life hospitalized. During her first three months, Addison was in four different hospitals. In addition to the abundance of testing (some of which were invasive), Addison underwent a tracheostomy to stabilize her ability to breathe and G-tube surgery to provide proper nutrition. Additionally, she completed serial casting for her bilateral clubfoot, followed by a tenectomy procedure on each foot. Addison finally arrived home in time for her 3 month birthday. After we were home, we visited Mounti SInai and met with Dr. Jabs who officially diagnosed Addie with Moebius Syndrome.

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Adeline

Moebius SyndromeAdeline, 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

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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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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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 long. She was our perfect angel but soon…

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Allie Johnson

My name is Allison Johnson and this is my journey so far on this earth. The day I was born the doctors diagnosed me with Moebius Syndrome. Moebius has affected…

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Allison Stewart

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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Alyssa

Well to start things off, I would like to introduce myself and my amazing family. My name is Shannon and I’m a single mother of 4 Beautiful children. I have a 14 yr old son named Phillip, and 3 girls Kaleigh 10, Nichole, 8 and Alyssa, 6. They all are wonderful kids and always strive for the best. Alyssa is the exceptional one by far out of all my children that has overcome so many obstacles so far in her 6 years of life. She never quits – she just keeps on pushing herself to do her best and has such an outgoing personality. Don’t get me wrong she has said many times I can’t do it or it’s too hard but I’m always there behind her telling her she can do it.

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Amelea

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 eat or swallow properly. We saw several…

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Amina

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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