Luis Felipe Villar Rozas’ Story

Constitución, Chile

Luis Felipe Villar Rozas is 42 years old and lives in the coastal city of Constitución, Chile, in the Maule region. Surrounded by beaches, a river, and dramatic rock formations, it’s a place known for its natural beauty and quiet rhythm. Luis lives close to his family — his parents, who remain active and full of life, and his younger brother, an artist whose creativity has always inspired him.

In recent years, Luis became involved with the Moebius Chile community. Alongside Lucas, its founder, he now helps represent the group within Chile’s Federation of Rare Diseases — a role that connects his personal journey with broader advocacy and community support.

Growing Up With Moebius Syndrome

Luis was diagnosed with Moebius Syndrome before his first birthday. For his parents, the diagnosis was deeply unsettling. In the 1980s, very little was known about the condition, and the uncertainty that followed meant frequent medical visits, especially related to the strabismus he was born with.

Despite that uncertainty, Luis’s parents made a conscious choice: they raised him as they would any other child. Fortunately, his Moebius Syndrome affects him primarily in physical appearance rather than function. He describes his childhood as generally happy — though not without moments of staring and school harassment. Over time, those experiences shaped his character and helped define how he learned to face the world.

Challenges, Growth, and Perspective

Adolescence was especially challenging. Like many people with Moebius Syndrome, Luis struggled with self-esteem and body image — feelings amplified during a stage of life where appearance can feel overwhelming. What helped him navigate those years was strong family support and a small circle of close, loyal friends.

Looking back, Luis believes Moebius Syndrome played a role in shaping who he became. Without it, he might not have developed the same depth of empathy for others’ pain. Resilience, perseverance, and the ability to face life head-on are qualities he now considers among his greatest strengths.

Everyday Life

Luis’s days usually begin around 8 a.m., when he drives to work at a medical center. He speaks warmly about his workplace and colleagues, describing them as supportive and genuinely kind.

Outside of work, he enjoys reading, listening to classic and Latin rock, good food, weekend runs, and long walks outdoors. His social circle is small but deeply meaningful — made up of people he trusts and values. What makes his days special, he says, is being able to enjoy what he does and the people he shares his life with.

What Brings Him Joy

Simple things bring Luis the most happiness: a good book, running along the beach, homemade meals like pasta or mashed potatoes with meat, and time spent with loved ones. His parents remain the most important people in his life, followed closely by his brother, extended family, friends — and, as he jokes with a smile, “one or two women who once left me in love.”

Living With Challenges

There are still challenges Luis navigates daily. Because he cannot fully close his eyes, he relies on artificial tears for life to manage chronic dry eye. He occasionally struggles with the pronunciation of certain words, but overall communication is manageable.

Self-esteem remains an ongoing effort — something he believes everyone with Moebius Syndrome must actively work on. The world, he notes, is still not designed to embrace difference. Learning how to exist confidently within it takes practice, patience, and strength.

A Message to Others

Luis doesn’t sugarcoat the experience of living with Moebius Syndrome. “It’s never easy,” he says. “You’re always rowing from behind.”

But his message is powerful and unapologetic: embrace what makes you different. Strangeness and difference are where real value lives. People with Moebius often disrupt a society that favors repetition and narrow ideas of what is “normal.”

With humor and defiance, he adds: “If the world turns its back on you — grab it by the ass.”

As January 24, 2026 approaches, Luis hopes the day serves as a moment of reflection and recognition for people with Moebius Syndrome around the world.

A Final Word to Parents

Luis closes with a message of encouragement for parents just beginning this journey with their children:

The road may be long. The race may start at a disadvantage. But never give up. When you run at your own pace, the journey is not only survivable — it’s deeply rewarding.