The Journey of Beautiful Destinations – a Column by Richard E. Poulin III

I stood in front of a room full of middle school students on Feb. 27, the day before Rare Disease Day, and asked a simple question: “How many of you think you have ever met someone with a rare disease?” A few hands slowly went up. Most did not. Those…

There are certain sounds that instantly wake a parent from the deepest sleep, especially for parents of children with aromatic l-amino acid decarboxylase (AADC) deficiency. A cough. A thud. Silence even feels suspicious to a parent of a child with a rare disease. Then there is the…

There is a space no one prepares you for. It is not the crisis of diagnosis, nor the triumph of breakthrough treatment. It is something quieter and, in many ways, more complicated. My wife and I felt it most recently while watching our daughter, Rylae-Ann, interact with her cousin, who…

For our family, the Chinese New Year has always been more than just a date on the calendar. It’s a reminder for us to pause, reflect, clear out the clutter — both literal and emotional — and move forward with hope. My wife, Judy, is from Taiwan, so these…

My wife, Judy, and I have always been a competitive couple. Backgammon? Intense. Canasta? Ruthless. Ping-Pong? Fast-paced! Trash talk was common, laughter was loud, and someone usually demanded a rematch. Naturally, when our daughter, Rylae-Ann, was born, we assumed she’d be drafted straight into family game night. Then life dealt…

There are moments in parenting when you walk into a situation thinking, “This is probably overpriced,” and still go anyway. This was one of those moments. My wife, Judy, and I were looking for another fun adventure. We live in Bangkok, Thailand, where there is no winter…

There were many times when my wife, Judy, and I almost lost our daughter, Rylae-Ann. The early years of her life were filled with medical emergencies, unanswered questions, and moments when the future felt painfully uncertain. Aromatic l-amino acid decarboxylase (AADC) deficiency is not a journey anyone…

Behind every child, especially a child with complex needs, are parents carrying unseen emotional weight. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare neurological condition that shaped every aspect of our early parenting journey. While much of the focus rightly goes…

As we step into 2026, our journey with our daughter, Rylae-Ann, and aromatic L-amino acid decarboxylase (AADC) deficiency continues, but it looks very different from how it once did. For several years, our entire world revolved around her well-being. Every decision, every plan, every ounce of energy…

Our family is packing our suitcases once again, but this time it feels different. Instead of bracing ourselves for a long journey ahead, Judy, my wife, and I find our excitement rising each day as we prepare for a short 10-day trip back to the U.S. We’ve been looking forward…