Josie’s Story — A Fighter from the Start

When Josie was born just three months ago, her parents never imagined the journey that lay ahead. Delivered by C-section, she entered the world struggling to breathe and was quickly taken to the UVA NICU. After a week of tests, an MRI revealed something her mother had never heard of before — Moebius Syndrome.

“As a mother, getting a diagnosis I had never heard of before terrified me,” she recalls. “There’s not a lot of information, research, or specialists out there to help make the best decisions for your loved one. Bringing more awareness could help the next person born with this syndrome.”

From the beginning, Josie’s road has been filled with challenges — and remarkable courage. Because of facial muscle weakness and low tone, she’s struggled to swallow and receive nutrition by mouth. To help her grow strong, doctors placed a G-tube. She was also born with a small jaw and underwent jaw distraction surgery at just one month old — a major step toward helping her breathe and feed safely. Josie has also received a trach and endured more surgeries than many experience in a lifetime, yet she continues to fight and flourish every day.

Her mother says what makes Moebius Syndrome so difficult isn’t just the medical complexity — it’s the uncertainty. “Moebius Syndrome is so rare and often misunderstood,” she explains. “Families frequently struggle to find accurate information, medical specialists, and supportive communities. Raising awareness can help change that. By promoting education and understanding, we can foster compassion, encourage early diagnosis and intervention, and inspire more research into treatments that improve quality of life.”

For Josie’s family, Moebius Syndrome Awareness Day — January 24 — represents more than a date on the calendar. It’s a day to honor every child, parent, and advocate learning to navigate a rare journey with hope. “I want to help the next mom or dad who is in the same shoes as my husband and I,” her mother says.

Her message to the world is simple, yet powerful: “My hope is that people are kind to others and not judge because someone does not have the ability to do certain things or tasks. Everyone with this diagnosis deserves a day to be recognized — not for what they have, but for who they are.”

In the short time since Josie’s birth, the Moebius community has surrounded her family with guidance and love. “They have helped us in so many ways,” her mother adds. “I hope I’ll be able to help someone the same way we have been helped.”

The Voice of the Moebius Syndrome Community – mfoms.org