Heaven

Holiday Featured Story of the Week: Heaven’s Story

The holiday season is often a time of reflection — a moment to look back at how far we’ve come and ahead to what’s still possible. For Heaven Baylor, that reflection is filled with resilience, growth, and hope.

Heaven is 24 years old, married to her husband Zack, and the proud “parent” of two small (and lovingly described as annoying) dogs. While she currently lives in Austin, Texas, attending law school, her story begins in the small rural town of Sweeny, Texas, along the Gulf Coast. Raised in a close-knit community, Heaven’s journey has taken her from small-town Texas to college in Waco, graduate school and social work in Houston, and now to Texas Law — a path built on determination and courage.

From a young age, Heaven knew she was different. She was officially diagnosed with Moebius Syndrome around the age of one, after spending time in the NICU at Texas Children’s Hospital. Her early challenges included breathing difficulties, feeding issues, and developmental delays. Thanks to attentive doctors, early intervention, and dedicated physical and speech therapy, Heaven made steady progress. Her mother believed strongly in empowering her with knowledge, and by the time Heaven was six, she could clearly explain her diagnosis — a gift that would help her advocate for herself throughout her life.

Living with Moebius Syndrome hasn’t always been straightforward. Like many in the community, Heaven faced bullying and being underestimated. But her experience also came with a unique challenge — feeling like she didn’t fully “fit” even within the Moebius community. Her facial paralysis presents differently, and she can smile a bit, which led to moments of doubt and even questioning of her diagnosis. In 2024, returning to the UT Health Houston Genetics Clinic brought clarity and validation: Heaven does meet the clinical criteria for Moebius Syndrome.

Despite lingering health challenges, including a weakened immune system and minor hearing loss, Heaven has never stopped moving forward. She graduated high school as salutatorian and shared her story publicly through her local newspaper. She went on to graduate college with honors, earn a master’s degree, and — an achievement she’s especially proud of — gain admission to Texas Law with a scholarship.

Today, Heaven’s days are full. She balances a demanding law school schedule with pro bono work, student organizations, and ongoing medical care. Her mornings start early, often with a bus ride to campus and a full slate of classes and commitments. In quieter moments, she finds joy in fantasy novels, open-world video games, and time spent with her husband and dogs — small comforts that help ground her during busy seasons.

As Heaven looks ahead, her goals are rooted in advocacy. She wants to use her voice and lived experience to help disabled children and families navigate systems that weren’t designed with them in mind. While she acknowledges the legal profession has room to grow in accessibility, she remains hopeful — encouraged by the kindness and support she’s already encountered.

This holiday season, Heaven’s message is one of reassurance and resolve:

Heaven’s story reminds us that the holidays aren’t just about where we are — they’re about how far we’ve come, and the future we’re still building. One brave step at a time.

The Voice of the Moebius Syndrome Community – mfoms.org