Stories from the Global Moebius Syndrome Community.

Clayton

Clayton was born on february 14th, 2006 in Ft.Myers, FL. He was born almost 6 weeks early weighing only 4lbs, 4ozs and only 17 inches long. The first thing I…

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Cody

updated November 2018 This is Cody. After many miss diagnoses Cody was diagnosed with Moebius Syndrome at the age of 6 months after many complications straight after birth, they kept…

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Daisy Lowe

Daisy Lowe was born 8 weeks early. She was immediately diagnosed with Pierre robin sequence and remained incubated for the next 7 weeks. During this time she had numerous desaturations…

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Dakotah

Dakotah was born on October 15 2008 via an emergency C-Section. I was my daughters birthing coach. On October 15th we checked in for what was to be a normal delivery. After 15 hours in labor and Dakotah’s heart rate dropping several times over the course of the day it was decided that a C-Section was necessary. When Abbie was taken into the delivery room I sat patiently by her side and watched and they worked on her. The Dr. was having a hard time getting Dakotah out, her head was stuck in Abbie’s ribcage, she was breach. Out comes this beautiful baby with tons of black hair. She was very quiet and didn’t cry. As they took her over to check her out I noticed that her eyes were extremely large and that she just stared, she didn’t blink at all. I noticed that her lip was droopy as well. The doctors checked her heart and did the basic APGAR tests that they do on a newborn but that was about it. Abbie and Dakotah were taken into the recovery room. While in recovery we tried to get Kotah to latch on, she was unable to do so. I started looking at her mouth and noticed that it did not open very far, almost as though her jaw was locked.

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Damian Frances Rodriguez

After enduring weekly sonograms for the last month and a half of my pregnance, and only being told I was carry a large baby, Damian Frances Rodriguez was born by c-section on February 11, 2011 weighing 9 pounds 15 ounces, a big baby indeed! My husband and I only briefly noticed there was something wrong with his hand before he was whisked away to NICU for breathing difficulties. I was not able to see him for an entire day. When I was finally allowed to go to the NICU, I noticed all of the tiny preemies and then saw Damian – he looked like a Sumo wrestler compared to all the other NICU babies! My family was busy researching what could have caused his small hand while the hospital staff told us nothing except all our speculations were wrong. His left side was comprimised somehow, but the doctors did not know why. My mother recall, however, staring into Damian’s big beautiful eyes and having the strongest feeling he wanted to smile but of course, was too young. Now we know he never will.

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Daniel Norman

Daniel is seven years old and the youngest of our six children.   My pregnancy was normal, however the delivery was rough and he died after he was born and needed to be resuscitated. Doctor’s could tell he didn’t “look” normal and while the doctors had lots of questions about him, they didn’t have any answers for us.

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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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