Stories from the Global Moebius Syndrome Community.

Addison

Addison 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

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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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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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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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 my life in positive and challenging ways. I can’t speak as clearly as an average person and this has been something I struggle with a lot, but like with everything I just persevere to get my message across. I also do not eat orally, I am fed through a g-tube and although it’s not always the most convenient thing, I just have to for my health. Moebius has set up many barriers for me for example because of my speech I have struggled socially because I don’t want to explain, why I was different for fear they wouldn’t understand.

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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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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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