Moebius Syndrome Foundation

Our Stories

“Alli said you have to believe you know what you’re talking about. Especially as people get into professional careers, you have to have the knowledge about the field. She said, yes, everyone who’s interviewing probably knows the same stuff, but it’s your confidence, it’s your delivery, and it’s having your own special view/spin on things, and that comes from just being yourself.” ~Alli Johnson

Our stories have meaning and power. When we share our story, we change perceptions, educate, and inspire those around us. Read through the stories below and use the contact form at the bottom of the page to share yours.

Articles on Careers and Growth

We are pleased to share articles shared from adults with Moebius about their personal journeys with education, careers, and life experiences.

Roland Bienvenu Talks Human Resources and Interviewing for Jobs

Roland Bienvenu has extensive experience in the Human Resources field, and has many great tips...
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Emma Morton Talks Pursuing her Passions and the Importance of Community

Emma Morton, a 2026 Moebius Syndrome Foundation Educational Scholarship recipient, said she is truly grateful...
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Heaven Baylor on Moebius Syndrome, Social Work, & Law School

Trial by Fire: Moebius Syndrome, Social Work, & Law School ‘Can she shut up? She’s...
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Our Stories

Scroll through stories of individuals living with Moebius syndrome and their families

Luis’s Story, 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.”
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Leslie’s Story: Crossed and Crooked

“From the outside, people saw a frail, tiny, crooked little girl. To me, on the inside, I was a strong, over-sized, energetic girl who enjoyed wearing dresses with lace and frills!”
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Leah Frances’ Story: 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...
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Julia Bryant’s Story

“I am not defined by my disability, nor would I ever allow myself to have that mindset. I can and will do anything I set my mind to with all of the grit, hard work, and determination that I have gained over the past several years. I am strong, I...
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Zoe Cameron’s Story

My name is Zoe and I am 16 living in England and I have Moebius syndrome. I was born with it from birth. My parents were told when I was born that I wouldn’t be able to live normally. What I mean by that is I wouldn’t be able to...
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Sophia Vanessa Orozco’s Story

My name is Sophia Vanessa Orozco and just like you I have Moebius syndrome. It has really been a struggle my whole life, not knowing if I fit in. I live in Los Angeles, California, on my own with 24 staff from Regional Center. My mom and dad are my...
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Sean Barnes’ Story: 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.”
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Tina Michael’s Story: 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.”
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Khaleb Phillips’ Limitless Story

“Despite the challenges, I am a very resilient person. I have gone through a lot in my life. It has made me a stronger person.”
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David Garcia’s Story

"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 Ph.D.! However, the question remained … Would I be capable of performing research in a laboratory?”
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Beau’s Story

“My granddaughter Beau was born on 26/09/2020. We live in Ireland and very little is known about Moebius 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...
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Nash Dickinson’s Limitless Story

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...
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Zoe Cross’s Story: 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...
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Chris Wasilewski’s Story: Limitless, 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...
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Janice’s Story: Grandparenting Angelina

“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.”
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Hoe Tom Bo

“Our house is located in a small village in Vietnam, where the climate is tropical and the locals are friendly. On a rainy day in August 2019 at a small hospital, our family welcomed a little angel. She was pretty, small and adorable little girl. The arrival of a new...
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Martin

"My son Martin has Moebius, athroygroposis, and scoliosis, as well as other problems. He is now 30 years old and dad to Alfie, age 8, and AJ, age 7. He hates being labeled and says he was born this way—it is all he knows and likes to get on with...
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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...
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“Marrying someone with Moebius has taken me to many places in the world, and we have met many wonderful people.”

Allan Dhaseleer

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THE MIGHTY

We have many talented writers within the Moebius community, and The Mighty has published many of their articles written about Moebius syndrome.