The Journey of Beautiful Destinations — Richard E. Poulin III

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…

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…

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…

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 years have passed since she…

Social media is an extraordinary tool, especially for families affected by rare diseases who are scattered across the globe. Without it, many of us would never have found each other. These online connections have prompted me to reflect on…

Our daughter, Rylae-Ann, lost her first tooth not too long ago, and boy was it an event. She’d been wiggling that thing for days, proudly announcing to anyone who would listen that her tooth was loose. While she was…

As the summer days grew shorter and the start of first grade loomed closer, we found ourselves reflecting on the journey that had brought us to this moment. My wife, Judy, and I remembered the days before our daughter,…

After an enlightening experience at the mall — where my wife, Judy, and I witnessed the calming influence that dogs had on our 6-year-old daughter, Rylae-Ann — we found ourselves reconsidering the benefits of adding to our family.

Once again, my family took a summer trip to Taipei, Taiwan, to contribute data to a clinical trial. Our daughter, Rylae-Ann, is participating in a study of the long-term efficacy of a treatment for aromatic l-amino acid decarboxylase…

A few weeks ago, our daughter, Rylae-Ann, mentioned she had a wiggly tooth. I gently pushed her teeth and found the wiggly one. The moment of losing her first tooth was near, and my wife, Judy, and I decided…

Finding places to visit with our 6-year-old daughter, Rylae-Ann, has been challenging. But keeping her unique needs in mind when planning makes the process much easier. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency,…

Many parents may dread the summer break from school, but for my wife, Judy, and me, it’s a time to create memorable moments. With our daughter, Rylae-Ann, the greatest of these is when we’re at the beach. Growing…