The Journey of Beautiful Destinations — Richard E. Poulin III

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I stepped into a world few people know about. This rare genetic condition affects…

Parenting a child with a rare disease often means celebrating daily triumphs and overcoming unexpected hurdles. For my wife, Judy, and me, our daughter Rylae-Ann’s journey with aromatic l-amino acid decarboxylase…

It was bound to happen. After six years of dodging it, our daughter, Rylae-Ann, finally caught COVID-19. For my wife, Judy, and me, this triggered a rush of emotions, including fear, worry, and, ultimately,…

I’ve always struggled to find the right words for what I’m about to describe. Maybe it’s because it feels too vulnerable, or maybe I haven’t fully unpacked the emotions. But as another school year…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I were overwhelmed and unsure where to begin. Initially, our primary concern was survival. After she…

My daughter, Rylae-Ann, is a beautiful, bright little girl with a rare genetic condition called aromatic l-amino acid decarboxylase (AADC) deficiency. If you’ve never heard of it, you’re not alone. Most…

During a recent visit from another parent whose child has aromatic L-amino acid decarboxylase (AADC) deficiency, a small comment made my wife, Judy, and I pause. “Your house looks like a…

With just two weeks left in the school year, my wife, Judy, and I find ourselves reflecting deeply on how far our daughter, Rylae-Ann, has come. It feels like just yesterday we were coaxing…

As the summer sun shines brightly, it presents an excellent opportunity for families to make plans that can significantly affect the social development of children with aromatic l-amino acid decarboxylase (AADC) deficiency and…

For parents of children with rare diseases, progress is rarely linear. Each milestone is hard-earned, often built upon months or even years of trial, error, and perseverance. Our daughter, Rylae-Ann, was born with…

For most parents, watching their child take their first steps is a moment of joy and celebration. For my wife, Judy, and me, it was also a moment that followed countless hours of patience,…