Stories from the Global Moebius Syndrome Community.

Christine Soldano

Hello my name is Christine Soldano. I am 59 years old. Wife,Mother,second generation Momma I am raising my three year old grandson. And I have Moebius Syndrome.

I was born n Chicago Illinois at Laura Ingalls Hospital on April3rd 1960.The doctors knew immediately there was something “different” I don’t use the word wrong because to me I am I have the same heart,mind and soul as anyone else. I was born with two club feet. One was surgically repaired and the other I wore a brace for years and it is straight. I didn’t walk untill I was around two.I also had crossed eyes. My Mom fed me with an eye dropper because I was unable to nurse.The doctor’s was lost they never gave my Mom a diagnosis and didn’t expect me to live.My parents didn’t know what to name me. My Mom actually named me after a loving nurse who cared for me. It wasn’t until the internet that I discovered the word Moebius.

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Christopher

“Hello everyone my name is Christopher and I am turning 3 on December 3, 2012.  I was born at 36 weeks of my mommy’s pregnancy  with  Moebius Syndrome,  Gastroschisis,  Double Chromosome…

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Ciara

I was born in Idabel, OK on November 9 1992. I was a blessing to my mom. The doctors told her that I may have Down's Syndrome and a feeding…

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Claire Olivia

Hi my name is Claire Olivia and I was born on August 1, 2014. My parents, Lee and Audrey Peppin of St. Louis, knew I would have club feet and…

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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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@DavidGarciaLimitless

Moebius Syndrome - @DavidGarciaLimitless I am a 6th year chemistry PhD student at Brown University. I am set to defend my thesis this upcoming April and graduate in May. I…

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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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