Evelynn Louise's Story

Birmingham, Alabama

Evelynn Louise is 9 years old and lives in Birmingham, Alabama. From the moment she entered the world, she has done things her own way—on her own timeline, with determination, heart, and a voice that refuses to be quiet.

The Diagnosis

Evelynn was diagnosed with Moebius syndrome just two hours after she was born in 2016. Her mom, Claire, was 22 years old at the time. A geneticist from another hospital delivered the news, explaining what Moebius syndrome was and how rare it is. He shared that he had only diagnosed one other person with Moebius—and that had been back in the early 1990s. That fact stayed with Claire and made the diagnosis feel even more overwhelming.

The weeks that followed were filled with fear and guilt. Claire worried she had somehow caused this. She remembers crying alone in the bathtub, terrified of what Evelynn’s future might hold and of everything that was still unknown.

Early Challenges and Life-Saving Decisions

Evelynn was born at 39 weeks weighing just over five pounds. At her two-week pediatric appointment, even her doctor had to research Moebius syndrome—he had never encountered it before. Weekly weight checks followed, but progress was slow. At three months old, Evelynn weighed only 7.4 pounds.

After Evelynn failed her fourth swallow test, Claire stepped into full “mama bear” mode and pushed for a G-tube to be placed. That decision changed everything. The very first night after the G-tube was inserted, Evelynn gained five ounces. Her G-tube quite literally saved her life.

Therapy, Milestones, and Big Dreams

Evelynn’s journey has included strabismus surgery just before her third birthday. Her surgeon told the family that Evelynn’s eye muscles were among the tightest 1% he had ever operated on.

She has worked through occupational therapy and physical therapy, and it was during a PT session that Evelynn took her very first steps. Today, she still receives speech therapy through her IEP at school and continues to grow in confidence and independence.

Evelynn doesn’t just walk—she performs. She loves to sing and dance, and at a Moebius conference in Atlanta, she stood in front of more than 300 people and sang “Let It Go” without a trace of nervousness. She sang her heart out.

She’s also a ballerina and has very clear plans for the future: Evelynn says she’s going to be a traveling pop star who lives in a cabin in the woods with her husky. As her mom puts it: Pop off, sister.

Everyday Life

Evelynn loves school and looks forward to getting ready each morning. She has a gift for making friends wherever she goes. Her best friend has been in her class since kindergarten, and now they’re in third grade together. They even attend speech therapy together, which has helped Evelynn thrive.

As a family, they enjoy walking trails, movie nights, and playing Monopoly—simple moments that mean everything.

What Brings Evelynn Joy

Evelynn’s grandparents are her favorite people in the world. Rapunzel is life. Her go-to meal is a cheeseburger with extra pickles, no exceptions.

Every single day includes a jam session—music on, dancing hard, shaking off the day together.

Hard Moments and Growing Confidence

One thing that truly frustrates Evelynn is that she can’t whistle. She has a small amount of movement at the corner of her mouth and can smirk, but she sometimes struggles to believe that her smile is beautiful.

Kids can be cruel. There have been days when Evelynn has come home in tears after comments from others. During those moments, she asks her mom a question that cuts deep:“Why me, Mama? Why did God give me Moebius?”

Building Evelynn’s confidence has always been a priority. Claire reminds her that hurtful words don’t disappear with age—that even adults still feel them—but what matters most is knowing who you are, not who others try to make you into.

Evelynn is a strong advocate for herself, and her family couldn’t be more proud.

A Message for Other Families

Claire shares this message with others walking a similar path:

It’s okay to be terrified of the unknown. Do the research—because most doctors don’t truly understand Moebius, and often you’ll be the one explaining it. Evelynn was labeled “failure to thrive” and started therapy at three months old. She didn’t meet milestones “on time,” but she is doing all the things.

Looking back, so much of my early worry feels small compared to watching her grow. Ask for help when you need it. A village matters. Mom guilt is real and shows up daily—but so do the hugs and the “I love yous.” Stay patient. Stay strong. Your Moebius baby will be the strongest person you know.

And one final thing everyone should know:

Watch out world—Evelynn Louise is going to be a traveling pop star.

The Voice of the Moebius Syndrome Community – mfoms.org