Bobby’s Story

Bobby’s story began even before his birth. What was supposed to be a routine checkup became the day our lives completely changed forever. What we hoped would be a calm arrival turned into an emergency C‑section, a moment filled with fear, urgency, and unanswered questions.

He was transferred to McMaster Hospital, where he spent the next 3 and a half months of his life surrounded by monitors, alarms, and rotating teams of specialists. Days blurred into nights. The hospital became our entire world. We learned to celebrate stability instead of milestones, to find hope in small improvements, and to live in an environment focused on survival rather than normalcy. Every test under the sun was done to figure out what was causing his issues, while we grew desperate every day to find an answer.

He eventually learned to breathe on his own, but Bobby could not safely or effectively feed by mouth and ultimately required a G‑tube to grow and thrive. Suddenly, we were learning pumps, feed schedules, priming lines, and how to measure every millilitre—while also learning how to be parents in a world we never expected to enter. Feeding became medical. Bonding looked different. Progress came in inches, not leaps. After a lifetime of anxiously waiting, we finally brought Bobby home.

As time went on, it became clear that Bobby’s challenges weren’t isolated.  He was diagnosed with a global developmental delay. His low tone affected how he moved, how he learned to sit, roll, and interact with his environment. Therapy became part of our daily life. We celebrated achievements many families never have to think twice about—holding his head up longer, tolerating feeds better, tiny but meaningful steps forward.

Doctors began to suspect a genetic cause, and despite extensive evaluation that provided no answers, the concern for an underlying genetic condition remains. We entered a space many rare‑disease families know all too well: living without a diagnosis. An “unknown” diagnosis is not a lack of reality—it is a lack of language. Bobby’s symptoms, disabilities, and needs are very real. What’s missing is a name that explains them. Living without a diagnosis means not knowing what the future holds. It means advocating constantly, repeating our child’s story again and again, and navigating systems that are built around diagnoses—not children who fall in between.

As Bobby’s parents, the emotional weight is heavy. We carry grief for the journey we imagined, alongside fierce determination to give our son every opportunity to thrive. We juggle appointments, therapies, equipment, and medical decisions, all while holding the invisible burden of uncertainty. There is a lot of fear —but there is also resilience, hope, deep love, and an unshakable belief in Bobby.

Bobby’s story is not just about medical complexity. It is about visibility. Families like ours are everywhere, quietly navigating disability, rare disease, and unanswered questions. We need greater awareness, understanding, and systems that support children even when modern medicine hasn’t caught up yet.

We share Bobby’s story to remind others that progress is not always linear, diagnoses are not always immediate, and children are more than their medical charts. Bobby is not defined by what he cannot do. He is defined by his strength, his perseverance, and the love that surrounds him every single day.

By sharing our journey, we hope to raise awareness for rare and undiagnosed conditions, build compassion within our community, and let other families know they are not alone.