Our son Bennett is our third child. By the time he was born, we thought we knew what to expect — the rhythms of newborn life, the familiar milestones, the small differences that make each baby unique. But almost immediately, I felt something I couldn’t quite explain. It wasn’t fear exactly, but a quiet instinct telling me that something about Bennett’s journey might look different from that of his older siblings.
Like many parents, I tried to balance trust with intuition. As weeks passed, questions lingered. I found myself gently but persistently pushing for answers through our pediatrician, advocating for a deeper look when things didn’t quite add up. That persistence led us into a world we never anticipated — appointments with specialists, including both oncology and neurology teams, and conversations filled with new medical language we had never heard before.
Eventually, Bennett was diagnosed with a rare genetic condition involving a SUFU gene mutation. Along with this came diagnoses of Joubert syndrome and Gorlin syndrome — words that initially felt overwhelming and heavy with uncertainty.
In those early moments, the future felt unclear. Rare diseases often mean limited information, few roadmaps, and many unanswered questions. We quickly learned that parenting a child with complex medical needs requires becoming an advocate, a researcher, and sometimes a voice strong enough to ask difficult questions again and again.
But Bennett is far more than a diagnosis.
He is joyful, curious, and thriving in his own beautiful way. He teaches us daily that progress does not always follow a standard timeline — and that milestones are just as meaningful when they arrive differently. Bennett’s journey is still unfolding. I am hopeful for a life full of endless potential and possibilities.