The Journey of Beautiful Destinations — Richard E. Poulin III

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…

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…

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…

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…

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…

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…

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…