Alayna’s Story — Told by Her Mom

My daughter Alayna, age 2, was diagnosed with Moebius Syndrome after spending two months in the NICU at Le Bonheur Children’s Hospital in Memphis, Tennessee. She has overcome so much more than doctors ever imagined, and we couldn’t be more proud to be part of an organization like Many Faces of Moebius Syndrome (MFOMS) that helps families like ours feel seen, supported, and understood.

Alayna’s Moebius affects her from her forehead down to her throat. She has a g-tube because the paralysis in her throat causes her to aspirate everything she swallows. Even with those challenges, she’s made incredible progress — she can roll over, hold her head up, and is even starting to get into crawling position! We know there’s a long journey ahead, but she has more fight in her than anyone I’ve ever met.

One of the hardest parts of this journey has been finding doctors who understand her condition. Our local hospitals had never heard of Moebius Syndrome, and when Alayna had a seizure last April, we had to spend precious time explaining her diagnosis instead of the team being able to focus on treating her right away. If more medical professionals were aware of Moebius, children like Alayna could receive the care they need faster — without delay or confusion.

For us, Moebius Syndrome Awareness Day on January 24th is deeply personal. We want people to know Alayna’s story, to understand what Moebius is, and to see that she’s just as full of light and potential as any other child. I believe she may be the only child in Arkansas with this condition, and that makes spreading awareness even more important. We love when people ask about her — it gives us a chance to educate others and help them see that being different doesn’t mean being less.

Because that’s our message to the world: Different doesn’t mean less. Children with disabilities aren’t incapable — they just do things in their own way. They deserve the same love, acceptance, and opportunities as any other child. Every day brings new challenges, but Alayna meets them with strength, determination, and joy. She truly embodies what it means to be Moebius strong. 💜

The Voice of the Moebius Syndrome Community – mfoms.org