Stories from the Global Moebius Syndrome Community.

Chelsey

Moebius Syndrome: Chelsey

“Mom, why are they staring at me?”  “Mom, why do the other kids at school whisper and point at me?” “Mom, why are my hands different?” “Mom, do I talk funny?”

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Christa

I am 39 years old. Within the last 5 years I have been sharing my story both at the MS conference, work staff meetings, and in schools. It has not…

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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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