The Journey of Beautiful Destinations — Richard E. Poulin III

December had only just begun when my wife, Judy, and I decided Santa should come early for our daughter, Rylae-Ann. Over the years, we’ve adapted holidays and events to make them more meaningful for…

On Christmas Day in 2018, our lives changed forever when our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency. My wife, Judy, wondered if she’d ever hold our…

When our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, we were handed a long list of symptoms that felt more like a set of instructions on…

Thanksgiving is a cherished family holiday, and this year, we have so much good news to celebrate and be thankful for. However, in late October, we learned the sad news that our daughter’s grandpa…

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…