Community member, David G, sent in this story in response to one of our story requests. This is our first story about Moebius Syndrome., a rare neurological condition that researchers estimate affects 1 in 50,000 to 1 in 500,000 newborns. It can be challenging to face the spotlight alone. Please thank David for stepping forward and sharing his story in the comments below.

“I had always dreamed of going to Paris, and this summer, my dream came to fruition.

I was ready to experience many memorable events like eating delicious food, tasting exquisite wine, and seeing beautiful world landmarks.

What I didn’t expect was for a few French words to change the trajectory of my life. It all occurred at a very unlikely place, the Champs Elysee metro stop. Heather, my close friend and agent, and I had arrived at our stop. We stepped out of the train and began walking toward the exit. As we were exiting, I noticed a mother and her son walking toward us. After taking a closer look, I realized that the boy had a debilitating limp that made it difficult to walk.

“You are not alone,” I thought to myself.

Difficulty walking was something I was very familiar with. I greeted them with a smile and said, “Bonjour.” The mother responded, “Bonjour.” The boy looked up but quickly and shyly looked away. As I passed them, I heard his mother say in French, “Did you see that guy? Did you see his hands? He has a disability just like you, and he looked so confident and happy.” Initially, I didn’t think too hard about what she said, but then my mind started to run, and it hit me.

For the majority of my life, I felt like I was constantly battling the world. It was David versus the Goliath-like preconceptions of society. I felt an insatiable desire to prove to everyone that I was capable of anything. I felt confused, not seeing any disabled people in positions of success. I felt aimless without a disabled role model. I felt isolated in the struggle against Moebius Syndrome. At that moment, in the metro stop, I realized I became the role model I never had.

A different path.

I was born in New Jersey to first-generation Colombian immigrants. At birth, I was diagnosed with a rare neurological condition called Moebius Syndrome. I was born with partial upper limbs, no feet, and a cranial nerve defect. This moment changed my world and set me on a different path.

At the age of five, I had surgeries in my eyes, mouth, and left hand to alleviate Moebius related symptoms. The bright lights and shiny sharp tools of the operating room were intimidating, but this was when my inner strength first awakened. I came to realize that my life was extraordinary, and I had to be brave in the face of adversity. Those surgeries, without a doubt, made me stronger and provided me with the courage to accept my reality. Shortly after, in the morning, while putting on my prosthetics, I realized that if I ever wanted to walk, run, or play fútbol, I would have to put on my prosthetics every day for the rest of my life. At that moment, life presented me with two options; I could allow myself to be consumed by self-pity, or I could accept my reality and refuse to be defeated.

I think about the exchange I had with the mother and her son by the metro often. I remember the mother’s smile. I remember her son’s low self-esteem, timidity, and uncertainty. I was that boy twenty years ago; since then, I have learned from my experiences. I trust in myself and my vision. [I believe my] purpose in life is to share my successes and struggles. [I want to] motivate people to be relentless in the pursuit of their dreams and to inspire those who were told they couldn’t be great.

If I never set limits on my capabilities, why should you? You are limitless.”

David Garcia – Providence, RI
Diagnosed with Moebius Syndrome since 1991

Were you diagnosed with a rare condition? Tell us about your experience in the comments below or check out our story requests to discover more ways to share.