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…
The Journey of Beautiful Destinations – a Column by Richard E. Poulin III
Every slight improvement adds up over time to something meaningful. For our daughter, Rylae-Ann, who lives with aromatic l-amino acid decarboxylase (AADC) deficiency, progress has never come from a single therapy or breakthrough. It’s been a collection of small, intentional steps. Recently, my wife, Judy, and I…
As our family gathers around the table on Thanksgiving, I know we’ll once again take a moment to reflect on how far we’ve come and how many people have helped us reach this milestone. Gratitude will take on a deeper meaning for us, shaped by love, sacrifice, and the extraordinary…
Within the community of people with aromatic L-amino acid decarboxylase (AADC) deficiency, we refer to the day of gene therapy as “Reborn Day” because it truly marks a new beginning. Our family celebrated our daughter Rylae-Ann’s seventh Reborn Day on Nov. 13. For my wife, Judy,…
Last week, Judy, my wife, and I had the privilege of attending the International Neurotransmitter Disorders Conference (INDConf), held Nov. 5-7 at Goodenough College in London. Nestled in the heart of Bloomsbury, the historic venue provided an inspiring setting filled with warmth, collaboration, and academic energy. The…
As parents of a child with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I have learned that balance is something we must constantly work to find. Between therapies, school, and everyday responsibilities, our family’s schedule can fill up quickly, leaving little room to breathe.
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 the role of nurse, teacher, therapist, advocate, and researcher. Like many caregiving parents, we often felt…
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 community and the importance of sharing our voices. We invite everyone to join…
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 once seemed impossible. I have often written about the life-changing benefits of gene…
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, and I had two choices: We could accept those words as truth, or we could fight…
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