Stories from the Global Moebius Syndrome Community.

Preston Tassi

Preston lives in Des Moines, Iowa and will be 7-years old in May 2019. He will begin 1st grade in the 2019-2020 school year. He has made lots of good little friends at his school and loves going to school. He tells everyone his favorite subjects are Gym, Lunch, and Recess. But he has done well in math and spelling. (His momma is very proud of him)! 000000000006

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Riley

My name is Abigail Ryan and i am 16 years old from Hampshire, England. I have an eight month old son called Riley James who was born on 29th June 2010 and has recently been diagnosed with moebius syndrome.

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Roland

I was born on March 7, 1951 in Bethesda, Maryland at the National Naval Medical Center.   At that time, my dad was serving at the Pentagon as an officer in the U. S. Navy.  Our family resided in Falls Church, Virginia (a D. C. suburb) on and off for nine years while Pop served in different capacities at the Pentagon.

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Tim / Open letter 2016

Hi! I’m Tim Smith President of the Many Faces of Moebius Syndrome. Each year I write something new about our community and the changes that are taking place in it. This year I want to do things a little different and talk about our community and it’s future. 

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Tony Manning

September 18, 2007, a day that started a new chapter in our lives. At 3:06pm in Labor and Delivery of University Hospital in Augusta, Georgia William Joseph Anthony Victor Manning II (AKA Tony) came into our lives. From everything that we had heard about the ultrasounds it was going to be a perfect delivery just a week early due to induction and we would have nothing but a healthy baby boy. Well it didn’t exactly work that way. (more…)

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Tyler

I had an uneventful pregnancy up until 29 weeks. I was then diagnosed with polyhydramnios (that is too much amniotic fluid) An ultrasound done at the stage raised further questions as to the health of the baby. The chest and abdomen measurements were too small, one exam questioned if there was a bladder another suggested difficulty finding the stomach! I left work at noon to be hospitalized that same day and then flown by helicopter to the nearest Women’s and Children’s Hospital.

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Vicki

In 1990 I was blessed with the birth of my baby boy – something I had waited for all my life.  There was only one catch – he couldn’t suck.  At the time of his birth, a pediatric neurologist told me that he had something called Moebius syndrome, and that meant he would never smile. I accepted that, forgot the name of the syndrome, and took my little boy home.

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Willem

Willem was born at 10:40am, July 12, 2005. My first thoughts were how happy I was that big brother Ben would have a playmate just shy of two years younger. As with my other two children, it was love at first sight. As his first day progressed I was calm but concerned and confused that I could not get him to nurse. After 11 hours of repeatedly trying to get him to latch on, one of the nurses said that they would have to try to feed him with a syringe because he doesn’t seem to want to suck. He ate from the syringe.

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