Stories from the Global Moebius Syndrome Community.

Bud

I'm Tina Wilkins, and my husband, Budd Wilkins, was born with Moebius Syndrome. His 40th birthday is July 7. Budd is an internatinally published film critic, and staff critic for…

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Caleb Downs

Ronnie “Caleb” was born on September 6th , 2004 in Shelby North Carolina. He wasn’t an early delivery, he was due on September 9th . It was obvious to the doctors that something was wrong with him (smaller jaw, no eye movement) but they didn’t have time to worry what it was at that time; he wasn’t breathing good on his on and the doctors made the call to the NICU at Levine Children’s Hospital in Charlotte some 60 mile east. Mind you the situation was an overload to his mother and I, we’d just had a baby, and we didn’t get to spend a few minutes with him till they were taking him away to Charlotte alone. Once my parents and I arrived at the other hospital the charge nurse allowed me to stay with him even though it was shift change and no visitors were suppose to be there.

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Caroline

Once upon a time there was a mother giving birth to her child. The doctor told her and the father that it was a girl. As any other parents, they…

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Cassandra

Cassie lives in Bethune, Saskatchewan, Canada.  Cassie was born April 30, 1999 with a rare syndrome called Moebius syndrome.  Moebius syndrome is about 1 out of every 150,000 children and…

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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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