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…
The Journey of Beautiful Destinations — Richard E. Poulin III
Richard E. Poulin III is an American currently working as Head of Middle School for an international school in Bangkok, Thailand. He is also the president of the nonprofit organization Teach RARE. In 2018 his newborn daughter, Rylae-Ann, was diagnosed with the ultra-rare disease, aromatic l-amino acid decarboxylase deficiency. Richard shares his journey and aims to provide caregivers with strategies and tips to improve their family’s journey.
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In November 2019, my wife, Judy, carried our 18-month-old daughter into National Taiwan University Hospital for an experimental gene therapy. Rylae-Ann couldn’t hold up her head, sit independently, speak, or control her movements. She experienced dystonia and oculogyric crises in which her eyes rolled upward and became…
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…
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…
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