Stories from the Global Moebius Syndrome Community.

Ben Myers

In 2011, an Egyptian man by the name of Gamal Ibrahim named his firstborn daughter Facebook, after the famous social networking site. Surprisingly, this was not the result of an obsession with the web. Rather, it was an act of gratitude – Gamal wanted to honor the website for facilitating the protests of January 25, 2011 which ousted President Hosni Mubarak.


Continue ReadingBen Myers


Recently i paid a visit to Tims website and had a good read as well as watching the video, after seeing and reading through his website i am so thankfull…

Continue ReadingBob


I will never forget the morning that Bradley was born. I was at my sister-in-law's house having Christmas dinner with family on Christmas night when I went into labor. The…

Continue ReadingBradley

Brianna Brockner

Brianna was a beautiful baby who brought joy to everyone who had the pleasure of knowing her.  Unfortunately, Brianna passed away when she was just 14 months old.   Brianna still accomplished much in her short life. She was on her way to sitting unassisted, could do ten signs and knew lots of other words, played with her toys, turned pages in books, rolled over from her back to her tummy, played with her toes, and was very smart. She learned something new every day and made everyone around her very happy. Her life was full of love and she is greatly missed every day.  We hope you’ll take a moment to read about her life and learn a little more about Moebius Syndrome.


Continue ReadingBrianna Brockner


Brooklyn Clarke
11/29/07- 6/14/08

Hello everyone, my name is Lucy, I am Brooklyn’s mommy.

When I found out I was pregnant with my little Bee, I was overjoyed, but as my pregnancy progressed, things started to get a little scary for me. During my 6 month ultrasound, the tech started acting very suspiciously, and said “I will get the doctor to come in and speak with you” and practically ran out of the room crying. I was terrified, and after the doctor came in to speak with me, was not any less worried. They had found fluid build up in Brooklyn’s kidneys, and that she had a clubfoot. This being my first pregnancy, I rushed home and did hours of research, only to be reassured that at least her foot was something that could be corrected.


Continue ReadingBrooklyn


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…

Continue ReadingBud

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.


Continue ReadingCaleb Downs


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…

Continue ReadingCaroline


Moebius Syndrome - Cassie Moebius Syndrome - 12/04/2019: Cassie is 20 years old & lives in Bethune, Saskatchewan. She has a trach, gtube & is night time ventilated. She graduated…

Continue ReadingCassandra
Read more about the article Cayla
Moebius Syndrome


Moebius Syndrome:Hey guys! Im Cayla from Kentucky and here's my story growing up with moebius. I was born in 97', it took a year or so for them to diagnose…

Continue ReadingCayla