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 l-amino acid decarboxylase (AADC) deficiency, a rare neurotransmitter disorder. Even with Judy’s background, we had a…
The Journey of Beautiful Destinations – a Column by Richard E. Poulin III
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 disorder affecting neurotransmitter production, my wife, Judy, and I have adapted our holidays to Rylae-Ann’s unique…
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 for the ups and downs of parenting, but nothing truly prepared me for raising a child…
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, and emotional balance. My daughter, Rylae-Ann, has taught me more than anyone else about not holding…
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 other complex challenges that are hard to imagine unless you’ve lived through them. For families like…
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 an apartment building I hadn’t thought about in years. A flood of memories came rushing back.
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 point, she was only a baby, showing signs of struggle that no one could explain. It…
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 daily task to the larger choices about her care, was centered around helping her progress. We…
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 — the final leg of this “parental marathon” being getting our daughter, Rylae-Ann, ready…
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. We’ve always believed in the cognitive benefits of bilingualism, such as enhanced problem-solving, creativity, and improved…
Recent Posts
- FDA draft guidance aims to streamline gene therapy development
- Closing the developmental gap: How we’re helping our daughter succeed
- Harnessing the power of books early in our daughter’s AADC deficiency journey
- New proposal seeks to fast-track rare disease treatments in UK
- The impossible became the new normal after we accepted AADC deficiency