Tim Smith’s Story

The Voice Behind Many Faces of Moebius Syndrome

About Me

My name is Tim Smith, and I live in Remington, Virginia. I’m the youngest of three children, with one brother and one sister.

Growing Up & Finding a Name

I grew up believing I was alone. My parents took me to several specialists, but no one could ever put a name to my condition.

Years later, an old girlfriend—who was a nurse—looked through my medical records and discovered that an eye doctor had diagnosed me with Moebius Syndrome when I was just two years old. Somehow, no one had ever paid attention to that diagnosis.

At first, the news was overwhelming. But eventually, it became a source of comfort. I wasn’t alone anymore.

Challenges & Triumphs

From the beginning, doctors told my parents I wouldn’t live. They repeated that throughout my childhood. I remember being four or five years old, talking with my cousin about the year 2000. When I asked my dad how old I would be then, he told me, “You probably won’t be around.” I think he believed the doctors. I was too young to fully understand his words, but I never forgot them.

That’s why one of my greatest accomplishments is simply living into my 60s.

School wasn’t easy. I was bullied often and struggled with self-esteem. By high school, things improved as I learned to fit in and found friends. But then another challenge came: my parents’ health.

• My dad passed away from pancreatic cancer when I was 13.

• My mom died of breast and lung cancer when I was 15.

  
  

I wasn’t prepared to live life on my own, and it took years to find my footing.

The hardest part to carry has been knowing that, as a high-needs kid, my parents gave so much of themselves to care for me while neglecting their own health. They didn’t have support, just as I didn’t.

In 2008, I visited the grave of baby Hannah Jade Devine, who passed away due to complications of Moebius Syndrome. Kneeling there, I asked God why I was spared and she wasn’t. That moment changed me. I knew I had to do more—for my parents, for Hannah, and for others who felt alone like I once did.

Creating and growing Many Faces of Moebius Syndrome (MFOMS) has been one of my proudest achievements. It has required sacrifice, but it has also given deep purpose to my life.

Everyday Life

To understand me, you need to know how my brain works: my thoughts run nonstop, from the moment I wake up until I fall asleep. I’m always juggling ideas—MFOMS projects, stories I want to write, bills to pay, or whether to buy new shoes. Even while watching a movie, my mind races at a hundred miles an hour.

On a typical day:

• I work a nine-hour shift.

• I deliver for DoorDash or Uber Eats in the evening.

• I catch up on personal tasks or MFOMS projects.

• I carve out time for “Tim time” and a little fun.

Weekends aren’t much different, though I always try to fit in at least one adventure.

What Brings Me Joy

I’m happiest when I’m doing something—working toward a goal, planning for the future, or going on adventures with friends or someone special.

As a kid, I realized that what I loved most about Christmas wasn’t the gifts—it was the anticipation leading up to it. That sense of anticipation and working toward something still brings me joy today.

What’s Difficult

I have a soft spot for animals, and seeing one hurt deeply upsets me.

I also get frustrated with people who refuse to see that truth and reality rarely live at the extremes—they live in the middle.

My Message

Always stay true to yourself. Always believe in yourself, even when you are outnumbered.

Reflections

Some people think I put myself in the spotlight with MFOMS because I want attention. The truth is, I do it because it’s the best way to draw attention to the cause. Whispering gets you nowhere—you have to shout if you want the world to listen.

But being the face of an organization comes with challenges. It makes dating especially difficult. Having a disability already means facing rejection, but leading a cause adds another layer. Many people don’t want to share the spotlight or worry the mission will take too much time away. People who lead disability organizations don’t have groupies. More often than not, they are spending time alone.

Still, I believe in the phrase:

That’s what I’ve tried to do—with my life, my story, and with Many Faces of Moebius Syndrome.

The Voice of the Moebius Syndrome Community – mfoms.org