“I want society to see that everyone has something that makes them beautiful and unique, and that includes people who have Moebius syndrome.”

Kari Storm

Our Stories

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

  • “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 Leah’s story, Living with a Visible Difference, here.

    Leah Frances
  • “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 is if you can support others in breaking down what they think are their limits!”

    Read Zoe’s story, Breaking Down Our Limits, here.

    Zoe Cross
  • “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 Janice’s story, Grandparenting Angelina, here.

    Janice Critchlow
    Grandparent to child with Moebius syndrome
  • “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 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.”

    Beau
  • “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.”

    Read more about Khaleb’s story here.

    Khaleb Phillips
  • “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 Chris’s story, My Moebius Syndrome Story, here.

    Chris Wasilewski
  • “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.

    Nash
  • “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?”

    Read more about David’s story here.

    David Garcia
  • “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 Tina’s story, Moebius Doesn’t Define Me, here.

    Tina Michael
  • “Having Moebius syndrome is extremely rare, it makes me, me. I wouldn’t change it for the world.”

    Read Sean’s story, Having Moebius Syndrome is Extremely Rare, It Makes Me, Me, here.

    Sean Barnes
  • “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!”

    Read Leslie’s story, Crossed and Crooked My Life, here.

    Leslie Dhasaleer
  • “When my brother was born, he had many complications and had to face so many procedures and surgeries. But we faced it together.”

    Read Josiah’s story, The Moment That Transformed My Life, here.

    Luis
  • “Zachariah is a 5-month-old twin to a sissy who 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.”

    Zachariah
  • “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 2 months old. In 2008, Khaleb was trached for three years due to a choking incident in day care.”

    Read KiOwana’s story, The Boy Who Smiles With His Heart, here.

    KiOwana
    Mother of son with Moebius syndrome
  • “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 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 says he was born this way – it is all he knows and likes to get on with it. I have kept in touch with some of the MSF members since Martin was around 4 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 of son with Moebius syndrome
  • “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 Moebius syndrome. He has a fun spirit and 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.”

    Nermine
    Mother to son with Moebius syndrome
  • “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, a great big brother and son, and just all-around good person. The photo is his eighth grade graduation with his best bud and little brother Andersen. On to high school!!”

    Jasmine
    Mother of son with Moebius syndrome
  • A little Asian girl is surrounded by flowers and the word Love

    “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 member of our family filled us with excitement. At first, she was thrilled, but within two weeks, she was wheezing more, having breathing problems, and making a sound that resembled a meowing cat when she breathed.”

    Read more of Hoe Tom Bo’s story

    Hoe Tom Bo
    Mother of a girl with Moebius Syndrome

“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.