Dominic, Angelo, and Sophia’s Story

Behind our family are three very different journeys—all connected by one diagnosis: Gould Syndrome.

We have three children—Dominic (18), Angelo (14), and Sophia Grace—each affected in completely different ways.

Dominic lives with many of the invisible challenges that come with this condition. His struggles aren’t always seen, but they impact his daily life, his confidence, and how he navigates the world.

Angelo has faced more medically complex challenges. He has had two strokes, lives with intractable epilepsy, and has lasting physical and cognitive effects, including weakness on his left side. He falls somewhere in the middle of the spectrum, but his needs are constant and significant every day of his life.

And then there is Sophia. She is fully dependent on care—feeding tube, oxygen support, wheelchair, and daily seizures. Her needs are around-the-clock nursing and require constant monitoring to keep her safe.

Between the three of them, we live every part of this diagnosis—from invisible struggles to full medical complexity.

We never expected this life. We don’t even know how many families have faced the same reality. It’s something we are still trying to understand ourselves.

It is exhausting in ways that are hard to explain. There are daily moments of fear, constant decision-making, grief, trauma, and a level of responsibility that never turns off.

But it is also filled with love, resilience, and a strength we didn’t know we had.

Our children are not defined only by their diagnosis—but their diagnosis has shaped every part of our lives.

So today, we share our story not just for awareness, but for understanding.

Because this is what Gould Syndrome can look like.

And no family should have to navigate it alone.

#GouldSyndromeAwarenessDay