Stories from the Global Moebius Syndrome Community.
“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?”
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…
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…
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…
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…
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…
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…
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…
@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…