Stories from the Global Moebius Syndrome Community.

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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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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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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Georgia

The worst thing is to be different and have to deal with kids. “It is not their fault, they are just kids”, someone would say but the point is that I was kid too and those kids were hurting my feelings….

I was born 27 years ago in a small village (1000 residents) in Cyprus. Cyprus is a small island in the Mediterranean Sea for those they haven’t heard about it before. I learn that what I have is a Syndrome with a name and that I am not the only one in the world two years ago!

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A Crushed Dream by Jessica Maher

Growing up all Jasmine wanted to do was play softball on the varsity team for her high school. She wanted to represent them on the field in one of the most important positions. Starting out as a freshman, she trained diligently with her mom, every single day after school before the season even started. When the softball season started, Jasmine was ready to show off her skills!

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