DJ’s Story

DJ’s Story

Our journey with Moebius Syndrome technically began when DJ was three months old, though we noticed signs much earlier. From the start, we could tell he wasn’t moving his face like most babies do.

When DJ was born, his blood sugar dropped and he spent two weeks in the NICU. While we were there, we were told he had an insufficient suck and needed chin support to take milk from his bottle. That was our first indication that something might be different. We also noticed that when he cried, he didn’t furrow his brow or frown the way most babies do.

Despite those early challenges, DJ did very well with breastfeeding—first exclusively, and then alongside solid foods until 12 months. From what I’ve learned through our support groups, that isn’t very common for babies with Moebius Syndrome, which made it even more meaningful for us.

Once we were home, we shared our concerns with his pediatrician about his lack of facial movement. She referred us to a neurologist, who asked us to come in right away. It was during that visit that we first heard the words “Moebius Syndrome.”

Hearing the diagnosis was overwhelming. I was scared—mostly for DJ. I wondered what his life would look like. How would he connect with other children? How would the world treat him? Alongside the fear, though, there was also a sense of relief. My instincts had been right, and we were taking the steps needed to understand how to support him.

Since his diagnosis, DJ—now one year old—has been receiving support through our state’s Infants and Toddlers Program, which provides resources for children with developmental differences. He participates in occupational therapy, physical therapy, and speech therapy.

We are especially proud of the progress he’s made in movement and communication. While he isn’t walking yet, he can crawl and pull himself up to stand. We’re hopeful he’ll be walking by age two—especially since he’s such a big, strong boy. Speech has been more challenging, but he continues to make strides. We can recognize phrases like “ready, set, go” when he’s playing on the slide or swings, and “thank you” when he’s handed a toy. He also signs “milk” and “more,” which has been an incredible way for him to communicate.

Our days, in many ways, feel very normal. DJ has a four-year-old sister who he absolutely adores. He follows her around, plays alongside her, and, like any siblings, they sometimes argue over toys and share snacks. We have therapy sessions every other week, and DJ is slowly becoming more comfortable and confident with his therapists.

At his core, DJ is a typical one-year-old. He loves when people mimic him, and he laughs at silly faces and sounds.

If there’s one thing I want people to understand about Moebius Syndrome, it’s that it looks different for every child. My hope is that when people see DJ, they look beyond his inability to smile in a typical way. I hope they see his personality, his determination, and everything he is capable of.

Most of all, I hope he grows up always feeling supported, understood, and deeply loved. This journey has taught me patience, resilience, and how to truly go with the flow, something my husband has been trying to teach me for years!