💜 Ivy’s Story

Age: 11

Location: Saskatchewan, Canada

The Diagnosis

Ivy had been in the NICU for about three weeks when we received her diagnosis. I remember it like it was yesterday — her nurses were there, along with the neurologist who told us. My brain was trying to process what we were hearing. My first question was, “Will she ever smile?” Hearing “no” broke me. But as parents, the sadness and grief quickly turned into “what now?” and “how do we help our little girl?”

Challenges & Triumphs

The first year was the hardest. There were alarms ringing, oxygen monitors, and a lot of suctioning. Ivy had cleft palate repair surgery and a g-tube placement surgery. Through her toddler years, she did a lot of therapies — although she always made milestones on her own terms. No amount of therapy was going to tell her what to do!

One of her most memorable achievements was passing her swallow test at about five years old. Eventually, we took her feeding tube out for the last time, and she’s been an amazing eater ever since. Communication continues to be a challenge, but with technology and her persistence, she keeps improving. There are moments of frustration, but she’s incredibly tough.

Everyday Life

Ivy is in grade six and has a wonderful group of friends who accept her completely — they can even understand her speech better than we can sometimes! She loves art, dancing, and animation. She has her own unique style and truly marches to the beat of her own drum.

What Makes Ivy Happy

Playing with her friends brings her the most joy. She also LOVES to tell stories — and talk… a lot!

Challenges and Frustrations

The hardest moments are when Ivy isn’t understood. She wants so badly to speak “normally” (a word we try to avoid). We remind her that her voice matters just as much as anyone else’s, even when communication is a struggle.

A Message to Others

Let your kiddo be their unique self. Don’t worry about when milestones are met — just celebrate that they are. Moebius kids are tough as nails and do things in their own time.

Closing Thoughts

Ivy has made our lives better in every way. She continues to amaze and challenge us every day. We are truly lucky to have such a unique and strong daughter.

The Voice of the Moebius Syndrome Community – mfoms.org