Stories from the Global Moebius Syndrome Community.

Dominic

Dominic is a very sweet, fun, calm and expressive baby. Everyone says he has a strong presence and aura, and he lights up a room. He was diagnosed at 4…

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Dylan

My grandson is a mischievous little fellow, with a wacky sense of humour, red hair and gorgeous blue eyes like his daddy AND he has Moebius Syndrome.

Dylan was born in November 2005 in New Zealand. Our nation has a population of just under four million, so chances are there are only three others in this country with Moebius. We call him our one in a million baby!

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Dylan Gentry

It’s a disorder that’s so misunderstood that its victims are often mistaken for being unfriendly or even rude, but it’s something they can’t help. It is the reason why the…

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Emma

I feel a little silly now writing a story about Emma, when I feel that most of your already know her so well :) Oh well, to all of those…

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Emoni Williams

I’m Emoni Williams. I was born on October 13, 1994 and raised in Detroit Michigan. At the time of my birth, I was having multiple complications with my body. Up until the age 11, I couldn’t eat by mouth. I had a G-tube placed in my stomach on the left side. Having that tube and listening to what the doctors were telling me, I was “convinced” to believe that I wasn’t capable of becoming my own individual. My family started to lose faith in me and everything. I was placed in special education classes because at the time, I didn’t have a say so or the courage to speak my mind.

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Erin

The time had finally arrived…..labour pains kicked in on the night of sept 10th 2005.……a moment I had longed for as I was unable to conceive for the 5 years…

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Francis

When he was born, we had no idea of the journey that lay before us. We did know that he had hearing loss,but other than that, nothing seemed amiss. I…

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Gabriella

I was a 20 y/o newlywed when I found out I was pregnant. I was so scared yet the happiest women alive. Everything was going perfectly fine untill my 20…

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Gareth

‘The only problems I have are because of how other people perceive me.’ Mar 21 2008 by Rebecca Edwards, Chester Chronicle && ‘The only problems I have are because of…

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