The Journey of Beautiful Destinations — Richard E. Poulin III

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, we quickly learned that caregiving required us to wear many hats. My wife, Judy, and I stepped into…

Each year, AADC Awareness Day brings together families, advocates, researchers, and supporters from around the globe. It’s more than just a date on the calendar (this; it’s a reminder of the strength of our…

For many children with aromatic l-amino acid decarboxylase (AADC) deficiency, gene therapy holds opportunities for the future. It’s a chance for them to move, speak, and experience life in ways that…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, the first thing the internet told us was devastating: She would die. At that moment, my wife, Judy,…

As a husband and father of a child with a rare disease, I’ve seen firsthand how being a caregiver can test a marriage. Our daughter, Rylae-Ann, has aromatic l-amino acid decarboxylase (AADC) deficiency,…

Starting something new is never easy for a child with aromatic l-amino acid decarboxylase (AADC) deficiency, especially when it involves doctors, clinics, and the unknown. Two weeks ago, we had a…

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…