The Journey of Beautiful Destinations — Richard E. Poulin III

Six years ago, on Nov. 13, 2019, our daughter Rylae-Ann received a second chance at life. Every year since, we’ve celebrated it as her “Reborn Day,” when we reflect and remember how far she’s…

When my wife, Judy, became a certified special education teacher, we never imagined how crucial her expertise would become in our personal lives until our daughter, Rylae-Ann, was diagnosed with aromatic…

Our family’s approach to holidays and adventures centers on celebrating in ways that support our daughter, Rylae-Ann. Since her diagnosis of aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic…

Raising our daughter, Rylae-Ann, has been an incredible journey full of lessons and challenges, requiring use to consistently reshape our expectations. With more than a decade of teaching experience, I thought I was prepared…

Being a parent teaches many life lessons, but parenting a child with a rare disease like aromatic l-amino acid decarboxylase (AADC) deficiency has offered me even deeper insights into patience, resilience,…

Aromatic l-amino acid decarboxylase (AADC) deficiency is a rare genetic disorder that disrupts the production of neurotransmitters, including dopamine and serotonin. That leads to severe developmental delays, weak muscle tone, and…

As my wife, Judy, and I drove through the streets of Taipei on a recent trip to celebrate the journey of the gene therapy Upstaza (eladocagene exuparvovec) in Taiwan, we passed…

In December 2018, my wife, Judy, and I embarked on a journey from Singapore to Taiwan, driven by nothing more than a hunch that our daughter, Rylae-Ann, might have a rare disease. At that…

When we discovered our daughter, Rylae-Ann, was born with the rare disease aromatic l-amino acid decarboxylase (AADC) deficiency, our lives underwent a complete transformation. Every decision we made, from the smallest…

Mornings in our house are always a bit like a relay race — with the occasional baton drop. Last week, as my wife, Judy, and I were preparing for our day as educators —…

My wife, Judy, and I have spent our careers teaching at bilingual schools, where the curriculum is delivered in at least two languages and all students are expected to learn in both of them.

Our daughter, Rylae-Ann, has journeyed from fighting for her life to living out a childhood dream. While she still faces some challenges, they pale in comparison to the battles she once fought. Nearly five…