Moebius Voices

1. Sophie: For those who don’t know your story, how does Moebius affect you?

Tina: Moebius has touched every part of my life. It affects my vision, my speech, and my balance. I cannot smile, and for much of my life, I wanted so badly to blend in that I never said a word. Hard to believe now, since I am never quiet. But back then, silence felt safer.

I have no peripheral vision, so I have to turn my whole head just to see what is around me. I cannot wear bifocals or progressives, which makes simple things like driving or reading a constant challenge. A non-Moebius-related tumor left me with facial nerve damage, which only magnified the complications I already lived with. I also live with retinopathy, chronic pain, and other health issues not listed here which makes the daily fight even harder.

Beyond the physical, I have spent my whole life feeling like I had to prove I was not stupid just because I looked different. I pushed myself to be the smartest person in the room. And I carried the weight of wanting a “pretty” face and body while battling nearly 200 pounds of excess weight that I eventually fought to lose.

But Moebius has also shaped the best parts of me. It has made me deeply empathetic. It has made me someone who stands up for people even when I am scared or standing alone. It has given me the fire to fight for what is right and the compassion to see people who might otherwise be overlooked.

Moebius is not something you grow out of. Growing old with it is not for the weak. But I have learned that what makes me different is also what makes me strong.

2. Sophie: What information were your parents given when you were diagnosed?

Tina: I was born at the very end of 1979, and the truth is they were not given much of anything. My mom was told to institutionalize me before she became too attached. Doctors said I would never walk, never talk and I would eventually go blind. I was even taught braille as a preschooler because blindness was seen as inevitable.

As a child, I saw a neurologist regularly, but the only label I was given was “neurological deficits.” There was no name for what I had back then, no community, no roadmap. Just a mother being told her child was broken beyond repair.

Even in public school, the system tried to put limits on me. I was constantly pushed toward the “slow” class because back then there were no 504 plans or protections. But my mom refused to have me in special education because she knew I was bright. She fought for me to be challenged, and because she did, I rose to meet the fight.

If she had listened to what the doctors and schools said, I would have likely succumbed to my surroundings. I would have become a product of low expectations. But she chose me anyway. She refused to give up and because she chose me, I learned to fight too.

3. Sophie: What was childhood and adolescence like for you as a person with Moebius?

Tina: Childhood was lonely. I did not know anyone else like me, and I did not even know what I had. I just knew I looked different.

I spent years wanting to disappear into the background. I stayed quiet, hoping silence might protect me from the stares and cruelty. But silence never erased me. It just buried me alive.

The truth is the hardest battles were not physical, they were social and emotional. I carried the sting of my father’s abandonment, which told me early on that I was not worth staying for. That wound ran deep, and it was reinforced by every whisper, every stare, every rejection.

But even in those years of shame, my mom’s choice stood as a reminder. She had chosen me. And every time I fought through stigma or proved myself in a classroom, I was proving her choice was not wasted.

Looking back now, I am even grateful for the pain I endured in those years because it shaped the kind of mother I became. It taught me how to raise my children to be better people than many of the children around me back then. It taught me to pour into their hearts, to remind them daily that they are seen and worthy and to make kindness their default. And it gave me the determination to help pave the way so that future generations, no matter their difference or disability, may not have to endure what I did. My suffering became my teacher, and it gave me the fire to make sure the world changes for those who come after me.

4. Sophie: What do you like most about yourself?

Tina: I love that I am a fighter. I have raised three children who are genuinely good humans with good hearts. I stand up for what is right, even when I am scared or standing alone.

And I think that is directly tied to my mom’s courage. She showed me what choosing someone looks like. Now I live that out by choosing to be unbreakable, no matter how hard it gets.

The truth is, I will probably never be completely comfortable with my outside appearance. I know what it is like to live in a world where mirrors feel more like weapons than reflections. I know what it is like to wish for a face that smiles back, for a body that does not betray you, for a beauty that the world recognizes. That longing never fully goes away.

But here is what I have learned: strength is not born in comfort. It is born in struggle. Every day I fight to release what I cannot change and to pour my energy into what I can. That battle has forged me into someone who is stronger, braver, and more compassionate than I ever would have been without it.

So what I like most about myself is not that I am fearless or flawless, but that I keep showing up. Scarred, imperfect, and unpolished, I keep choosing to fight. I keep choosing people. I keep choosing purpose. And that, to me, is more beautiful than any reflection in the mirror could ever be.

At the heart of it, my story is the same as my book title: the gospel of a girl the world tried to break, told by the woman whose mama refused to let her stay broken.

5. Sophie: Can you describe a time when you’ve needed to adapt things/situations to suit you and your Moebius?

Tina: Adaptation is my everyday reality. From needing to turn my whole head to see, to finding ways to read when bifocals are not an option, to adjusting for my lack of balance, I have learned to live in a world not built for me.

But maybe the bigger adaptation has been emotional. I had to adapt to a life where people judged me before they knew me. I had to learn that if I could not change how people saw me, I could change how I saw myself.

And when the weight feels too heavy, I have learned the quickest way to shift my focus is to reach for someone else. Helping another person in their pain has a way of pulling me out of my own. It steadies me. It gives me perspective. And it reminds me that even weakness can carry strength when it is given away.

The truth is, every single day with Moebius requires adapting. It is learning to keep going when your body says stop. It is walking into rooms where you know you will be stared at and choosing to stay anyway. It is turning disadvantages into strategies, pain into perspective, and rejection into resilience. Adapting has never just been about survival for me. It has been about finding ways to live fully, love deeply, and make sure my scars mean something.

6. Sophie: What is lifelike for you now as an adult?

Tina: Life is full of both victories and challenges. I live with retinopathy, chronic pain, and the daily complications of Moebius along with other health issues that magnify the fight. But I have also lost nearly 200 pounds, and I no longer see my scars and struggles as shame. I see them as proof that I am still here, still standing.

I am a wife and a mom to three incredible kids. I have worked in healthcare at Aetna, Texas Health Resources, and even with the CDC supporting 9/11 victims and first responders. Those experiences taught me how to fight for people in complicated systems and I now use those same skills in my Moebius advocacy as a regional coordinator.

I am also becoming an author. Writing My Mama Would Have Fought You allowed me to reclaim what disability and trauma tried to steal from me. My life is not easy, but it is meaningful. I know now that I was never meant to have the easy life. I was meant to walk through fire and come out carrying buckets of water for people still burning.

And through it all, I will never allow my disabilities to keep me from living my best life. I laugh loudly. I love deeply. I raise children who are kind and good. I fight for people who feel unseen. I tell my story so that someone else finds the courage to keep going. Every time I push through something hard, I think of my mom. She chose me, and because she did, I am here building a life that matters, one that proves her courage was not wasted.

7. Sophie: What would you say that having Moebius has taught you or shown you?

Tina: It has taught me that my struggles are not in vain. There were nights I cried out to God asking, Why me? With time I began to see that my struggles gave me purpose, to help people know they are not alone.

It has shown me that strength is not the absence of pain but the refusal to quit. If someone as weak and broken as me can keep going, then they can move mountains too.

Most of all, I learned what my mom always taught me: when you are struggling, take the focus off yourself and help someone else. That mindset carried me through my hardest seasons, and it is why I tell my story now.


8. Sophie: What more do you feel needs to be done to achieve better acceptance and integration of people with facial paralysis?

Tina: We need visibility. The world cannot accept what it refuses to see. Too often people with Moebius are hidden away, pitied, or overlooked. But when our stories are shared, when our faces are seen, acceptance follows.

We need to normalize difference, not just tolerate it. That means representation in media, education in schools, and honest conversations in families and communities.

And it also means realizing we are not all that different. We laugh, we love, we dream, we work, we raise families, and we want to be accepted for who we are. Once you really see us, you understand that our value is not diminished by our differences. We are resilient. We are whole.


9. Sophie: What’s a hope you have for families who are receiving a diagnosis of Moebius today?

Tina: My hope is that they are told a very different story than the one my mom was told. I hope they hear truth instead of fear. I hope they know their child is worthy, capable, and full of possibility.

I hope they find the courage to choose their child fully, even on the hard days. Because that choice makes all the difference.

I want parents to know that yes, there will be challenges. There will be surgeries and struggles, stares and questions. There will be moments when it feels like the world is against you. But there will also be laughter. There will be love. There will be milestones you were told would never happen, first steps, first words, graduations, and a life filled with purpose.

Do not be afraid to push your child out of their comfort zone. I know every disability is different but overprotecting them will not serve them in the long run. Encourage them, challenge them, let them try and fail and try again. Even if they do not show it in the moment, they will be grateful later. I know I am.

And above all, I hope they understand this: You are not fragile because of Moebius. You are like a diamond, formed under pressure, resilient, and impossible to break. And when you pour that strength into lifting people up, you do not just survive, you light the path forward.

Parents need to hear this: your child’s life will not be easy but it will be extraordinary. Not in spite of Moebius but because of it. And years from now, when they look back, they will not thank you for protecting them from the world, they will thank you for preparing them to change it.