The Journey of Beautiful Destinations — Richard E. Poulin III

As parents, Judy and I have learned that change can mean very different things to different children. For many, change brings excitement, curiosity, and growth. For our daughter, Rylae-Ann, change once meant fear, uncertainty,…

I’ve never been someone who spends time looking back to psychoanalyze my past or delve deeply into philosophy. Instead, I’m typically looking forward, planning, and moving ahead. However, two significant events that unfolded in…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I felt utterly lost. The diagnosis was ultrarare, the prognosis uncertain, and the treatments…

When you’re the parent of a child with a rare disease like aromatic l-amino acid decarboxylase (AADC) deficiency, you quickly learn that progress doesn’t come in straight lines. It zigzags, loops,…

For our family, July felt like running a marathon while juggling. The month involved a constant mix of motion, focus, and unpredictability. Each day brought challenges, milestones, and surprises. As parents of a child…

Rylae-Ann, my daughter, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, an ultra-rare neurotransmitter disorder that disrupts the production of dopamine and serotonin. Before she received life-changing gene therapy at…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I stepped into a world few people know about. This rare genetic condition affects…

Parenting a child with a rare disease often means celebrating daily triumphs and overcoming unexpected hurdles. For my wife, Judy, and me, our daughter Rylae-Ann’s journey with aromatic l-amino acid decarboxylase…

It was bound to happen. After six years of dodging it, our daughter, Rylae-Ann, finally caught COVID-19. For my wife, Judy, and me, this triggered a rush of emotions, including fear, worry, and, ultimately,…

I’ve always struggled to find the right words for what I’m about to describe. Maybe it’s because it feels too vulnerable, or maybe I haven’t fully unpacked the emotions. But as another school year…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I were overwhelmed and unsure where to begin. Initially, our primary concern was survival. After she…