My Story: Dominique Aubreanna Estrada

Ohio

I was diagnosed with Moebius Syndrome right after I was born. My doctor, Dr. Lucker, told my parents about it at birth — and even asked if they still wanted me. From that moment, I’ve known I had Moebius my whole life.

At first, I hated it. My childhood was filled with nonstop surgeries and endless bullying. The only bright side was the friends and Moebius family I gained along the way. Even going to conventions scared me because of the research testing and medical reminders. My Moebius journey has truly been a rollercoaster. I’ve died three times and each time my dad brought me back when I was younger. I went through constant dental surgeries, and dental health is still something I struggle with today.

Bullying followed me through elementary and high school. Things began to shift in 12th grade when my English teacher introduced the book Wonder and allowed me to share my journey with my class. For the first time, my story was heard. In college, people were fascinated by my journey, and that was healing. Moebius has definitely tested my limits when it comes to pain and mental health. I’ve overcome so much, but I still experience hard emotional shutdowns where I can’t speak or respond — times when no one can get through to me.

One turning point in my medical journey was becoming the second person to receive smile surgery from Dr. Zuker. I could have been the first, but it took a lot of coaxing after the trauma of so many earlier surgeries. It ended up being the best surgery I’ve had. At Sick Kids Hospital, they treated me like family and kept me fully under during the entire procedure. It was unlike anything I had experienced before.

Today, I’ve built a life I’m proud of. I work at the Cleveland Clinic as a PSS. I have a beautiful family — one angel baby, two little girls, and an amazing, dedicated husband. I also have seven godchildren who mean the world to me. I love riding horses, especially western and barrel racing, and spending time outdoors with my family: four wheeling, grilling, camping, and sitting around bonfires. We try to go on as many adventures together as possible.

What makes me happiest is succeeding in life and seeing my family happy. I also feel proud when the Cleveland Clinic asks me to share more about Moebius and my journey. What discourages me is putting my own health on hold, especially dental care, because of everything my family is going through. I’ve finally scheduled with a dentist again, but it’s terrifying. I know I’ll shut down, and I always warn doctors and nurses ahead of time. Sometimes they don’t understand, and it’s exhausting having to explain. Waking up during procedures because I’m not kept under long enough is traumatizing — and being told to “just hang on” makes it worse.

If I could share one message with the world, it would be this: don’t judge a book by its cover. You don’t walk in my shoes, and I don’t want pity. I just want understanding. To the Moebius community, I want to say: it’s never going to be easy, but it’s worth it. Never give up. We have a family in one another. We are important. We are meant to be here. This life can be beautiful if you embrace it — it’s okay to be different, and I wouldn’t want it any other way.

And one fun fact: it amazes me that I’ve found two “twins” in the Moebius community who look nearly identical to me, even though we aren’t related.

The Voice of the Moebius Syndrome Community – mfoms.org