The Journey of Beautiful Destinations — Richard E. Poulin III

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…

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…

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…

After years of struggling to get our daughter, Rylae-Ann, to sit for a haircut, we finally had a tear-free experience. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a…

My daughter, Rylae-Ann, followed me and my wife, Judy, into the mall for routine shopping. We were greeted with whimpers and yelps from various furry friends as soon as we entered.

With popcorn and drinks in hand, I walked with my 5-year-old daughter, Rylae-Ann, into the dimly lit cinema. Because of her limitations, I feared the worst but hoped for the best. My wife, Judy,…