Stories from the Global Moebius Syndrome Community.

Daniel Preston

Daniel Preston is my youngest son. He is 13 years old and is a vibrant and energetic, albeit at times shy, young teenage boy. He was born with Moebius in 1997. At the time of his birth we really had no idea what Moebius was, or that it was indeed what Daniel had. Upon his birth he was whisked away from us and we were told he had no vocal usage and no facial muscle usage. He had less then normal movement in his limbs, and although everything seemed to be working just fine the doctor’s feared he would be a vegetable for life. He confounded the doctor’s the day he was born. Daniel could not close his eyelids and he didn’t produce enough moisture to keep his eyes from drying out. His mouth did not close and his jaw was recessed quite a bit. His ears were tilted back more and were smaller then normal and his nipples were farther apart then normal. Daniel was also allergic to his own urine and had to be changed quite frequently. On top of all that he had a congenital kidney problem that might need surgery very soon. We left the hospital with our newly born wonderful little boy not knowing what would be in his future, or ours for that matter. 

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Darlene

I was born on October 18, 1951 with Moebius Syndrome.  Back then
doctors never ever heard of it.

Most of my young life was spent in and out of hospitals.  Part of my syndrome includes club feet.  I wasn’t able to walk until I was three years old.

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Dave

I am 28 years old and I live in Stockton on Tees in the north east of England with my mum, dad, brother and sister who are younger than me. I love supporting my local football team, reading and watching TV. I have undergone operations on my feet, eyes and ears. My motor skills are affected but it does not stop me from volunteering as an admin assistant at Shaw Trust Stockton.

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David

Was born on March 7, 1943. Mom was having complications with the birth, so I was born at a near-by hospital. Noted this because Mom always thought what proved to be Moebius Syndrome was due to an injury during the birthing process. 


During the first days of life I experienced rapid weight loss. Only by chance the doctors recognized I could not nurse and was starving. From then on Mom fed me milk with a spoon until at eight months (I’m told) when I learned to drink from a cup – messy, but effective.

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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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