Many Faces of Moebius Syndrome – awareness & advocacy

Create Your Story with Story Builder

Everyone has a story worth telling. Our Story Builder is designed to help you share your child's story in a meaningful way. By answering a set of guided questions, you’ll give us the details we need to create a personal story that truly reflects their journey.

We encourage you to give as much detail as possible in your answers. The more you share, the more others can learn about Moebius Syndrome, connect with your experience, and feel inspired. While shorter stories may get your name online, detailed stories help our community grow stronger and more understood.

Once your story is finished, you’ll have the option to keep it for yourself, or, if you’d like, allow us to share it on our website so others in the Moebius community—and beyond—can read, connect, and be inspired.

Take your time, answer honestly, and remember: your voice matters.

When you’re finished answering the questions, make sure to scroll to the bottom and click Submit. Your answers won’t reach us until you do.

Moebius Voices Story Book Q & A

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1. About Your Child What’s your child’s name, age, and where are you from?

2. The Diagnosis When did you first learn your child had Moebius Syndrome, and what was that moment like for you? Tell us how the diagnosis happened — was it during a doctor’s visit, through research, or another experience? What thoughts and emotions went

3. Challenges & Triumphs What challenges has your child faced, and what achievements are you most proud of them for? Think about therapies, surgeries, communication, school, or daily milestones. Big or small, what stands out to you, and why does it make y

4. Everyday Life What does a “day in your child’s life” look like? Share about school, friends, hobbies, therapies, or family activities. What makes a typical day unique for your child?

5. What Makes Your Child Happy? What brings your child the most joy? It could be favorite activities, toys, foods, or simple family moments. What makes them smile or laugh the most?

6. What makes your child sad or frustrated? Are there moments that are especially hard for them? Tell us about those challenges — in communication, health, or daily life — and how they (and you) cope.

7. Message to Others If you could share one message about your child, what would it be? It might be advice for parents, encouragement for new families, or a call for awareness and inclusion.

Anything Else Is there anything about your child’s story you’d like to include that hasn’t been covered yet? Feel free to add any special details, memories, or reflections that make your child’s story uniquely theirs.

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Thank you for taking the time to share your story. Your voice makes a difference.

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Many Faces of Moebius Syndrome

Moebius Voices Story Book Q & A