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I became aware of the Moebius Syndrome Foundation in 1996, and immediately reached out to them. In the next couple of years, I met a few Texas children and their families with Moebius, in addition to a lady from west Texas who had Moebius. I attended the Foundation’s 1998 conference which was held near Toronto, Canada (the Foundation holds a conference every two years). We had people of various ages with Moebius not only from the U. S. and Canada but from other countries as well. In particular, I was pleased to become acquainted with about 15 other adults with Moebius who were in attendance. Many of the “quirks,” idiosyncrasies, and characteristics some of us share were easily noticed…For this and other reasons, the conference was an emotional, life-changing experience for me!
Read more about Roland’s story here.
I grew up in the 60’s in a very homogeneous suburb and nobody looked like me and spoke like me and I couldn’t articulate as a child what I felt, but now as I look back I felt an enormous sense of alienation from inside my family and as well in the outside world.
Being diagnosed with Moebius Syndrome late in my life, then finding your group, has changed everything for me. I finally have a place (though so far only virtual!) where I belong, which to me is a fundamental human right; to know and to feel that there is a place in this world for you.
What Makes Me Limitless
“I want society to see that everyone has something that makes them beautiful and unique, and that includes people who have Moebius syndrome.”
Read more about Kari’s story here.
My Life with Leslie
“Marrying someone with Moebius has taken me to many places in the world, and we have met many wonderful people.”
Living with a Visible Difference
“It wasn’t until the age of 28 that I had the confidence to face my fears and to stop covering my mouth. I felt an overwhelming sense of freedom when in public as I could now communicate with people far more easily and I was able to smile at people with my own unique smile, whenever they smiled at me.”
Read more about Leah’s story here.
Breaking Down Our Limits
“…I am now building a career in coaching and some speaking, supporting unique, goal-oriented professionals and business owners to aim high and go after the career or business they always dreamed of having. When I get letters of thanks from people who have worked with me, I often get a lump in my throat, and shivers down my spine. One of the best jobs in the world if you can support others in breaking down what they think are their limits!”
Read more about Zoe’s story here.
“When we were out in public, I helped Lina deal with kids who stared, pointed, or said somewhat obnoxious things. Adults were more subtle. We came to the conclusion that our job was to educate and be kind. But that was a challenge sometimes.”
Read more about Janice’s story here.
“My grandaughter Beau was born on 26/09/2020. We live in Ireland and very little is known about Mobius syndrome here. As a result, we are having great difficulty with our doctors understanding Beau. She is a funny baby with lots of personality but because the doctors can’t read her, due to a lack of facial expressions, they think she doesn’t understand a lot. It can be quite annoying at times! Beau was also born with a club foot and has a trach due to her jaw being small micrognathia; however, she is the strongest little girl I know. She has made me so proud in so many ways. We love her to the moon and back.”
My Limitless Story
“Despite the challenges, I am a very resilient person. I have gone through a lot in my life and it has made me a stronger person.”
Read more about Khaleb’s story here.
My Moebius Syndrome Story
“I have Moebius Syndrome and was born without the ability to physically smile, among other things such as inability to close my lips, lack of lateral eye movement and an underdeveloped left side of the body. However, like most people with Moebius I never let that stop me from doing the things I wanted to do.”
Read more about Chris’s story here.
“Before Nash was born we knew he would have missing fingers on the left hand and would have bilateral clubbed feet. It wasn’t until he was 6 months old that he was diagnosed with Moebius syndrome. We never thought we would have a child with a rare neurological condition. It has been both a challenging and rewarding experience that has made us all stronger!”
Read more about Nash’s story here.
“My intentions were there. My heart was set! I loved science and felt passionate about understanding the chemical principles that govern biological processes. I was going to pursue a PhD! However, the question remained… Would I be capable of performing research in a laboratory?”
Read more about David’s story here.
Moebius Doesn’t Define Me
“Yes, I have Moebius but I am more than my ailment. My diagnosis doesn’t define me. I, Tina, am a wife, mother, friend, advocate, and someone who tries to love her neighbor more than herself, someone who does her best to make this world a better place.”
Read more about Tina’s story here.
Having Moebius Syndrome is Extremely Rare, It Makes Me, Me
“Having Moebius Syndrome is extremely rare, it makes me, me. I wouldn’t change it for the world.”
Read more about Sean’s story here.
Crossed and Crooked My Life
Read more about Leslie’s story here.
The Moment That Transformed My Life
“When my brother was born he had many complications and had to face so many procedures and surgeries but we faced it together.”
Read more about Josiah’s story here.
“Zachariah is a 5-month old twin to a sissy that is one minute younger than him. He was recently diagnosed with Carey-Fineman-Ziter syndrome which is a combination of Moebius and Pierre Robin Sequence. He loves his best friend, Fred, a stuffed elephant. He is an absolute sweetheart and loves to be cuddled and hold hands.”
The Boy Who Smiles With His Heart
“My name is Kiowana and I am a Sergeant First Class in the United States Army. My husband and I have a 10 year old son named Khaleb. He was diagnosed with Moebius syndrome at two months old. In 2008, Khaleb was trached for 3 years due to a choking incident in daycare.”
Read more about Khaleb’s story here.
“My son Martin has Moebius, athroygroposis and scoliosis, as well as other problems. He is now 30 and dad to Alfie, 8, and AJ, 7. He is on the autism spectrum, has 20% restriction on body movements and does not feel pain, so he needs to be checked over after a fall. He hates being labeled and said he was born this way, it is all he knows and like to get on with it. I have kept in touch with some of the members since Martin was around four years old and it has been great to watch them grow or hear their news. This has been much easier with the Internet.”
— Pauline, mother
“I am Nermine and my son David is now 6 years old (born on July 09,2009). He has a twin brother named Mark. David has Moebiuss syndrome . He has a fun spirit, he loves to laugh and make jokes. I taught him to have a happy heart (not the face) as the heart is the most important part to be happy, not how we draw the smile on our face. Thanks and appreciate your efforts.”
— Nermine, mother
“My son Quentin is 14. He was diagnosed with Moebius syndrome several hours after he was born. Since then he has had intensive intervention. Although he still has a few issues related to Moebius, he is pretty awesome. He’s incredibly intelligent, an A-B student, great big brother and son, and just an all around good person. The photo is his 8th grade graduation with his best bud and little brother Andersen. On to High School!!”
— Jasmine, mother
We have many talented writers within the Moebius community, and The Mighty has published many of their articles written about Moebius syndrome.