The Journey of Beautiful Destinations — Richard E. Poulin III

Chinese New Year celebrations are a two-week extravaganza filled with food and excitement that can overwhelm the senses. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare disease required my wife,…

One minute, it was a slow coo, and the next, a high-pitched scream. It may have sounded obnoxious to a random observer, but for us, it was speech. It was a long way from where a typical 3-year-old should…

I placed travel neck pillows around my daughter, Rylae-Ann, to make sure she was snug in the swing. I slowly began to push her. Immediately, she started snorting and giggling. Rylae-Ann didn’t have much of a choice about…

As my daughter’s shaky hand brought the food to her mouth, sauce and pieces of food stuck to her long, curly hair. Despite her fixating on the fork and sticking out her tongue for extra support, Rylae-Ann’s…

As I carried my daughter, Rylae-Ann, to bed one night over Christmas vacation, I noticed my arms shake beneath her. There’s no denying it, the days of her being a baby, a toddler, and even a preschooler…

Life as a rare disease family can feel isolating at times. Not many people can relate to our challenges or accommodate our unusual needs. However, isolation can limit powerful opportunities for a child’s learning and development. My wife, Judy,…

Judy, my wife, and I sat slumped on a bench in a random park that we’d stumbled upon as we walked the cold streets of Taiwan on the night of Christmas Eve 2018. Somehow, we thought a bottle of…

Social networks offer a public platform for people to share their ideas, but authenticity can be a challenge to identify amid the abundant content available. As a parent of a child with a rare and incurable disease, I could…

Even before our daughter, Rylae-Ann, had gene therapy, we knew that she would require immediate and intensive intervention due to her rare disease. There was little guidance on what to do, but my wife, Judy, and I realized…

The road to potty training our daughter was one of the most difficult journeys my wife, Judy, and I set out on. More significant challenges took precedence before this, but potty training was an inevitable milestone we knew we…

Rebirth is a common theme that appears in such classic stories as “Sleeping Beauty,” “Beauty and the Beast,” “A Christmas Carol,” and “The Lion King.” The idea holds a special place in the psyche of humans and, especially, in…

When my wife, Judy, and I discovered that our daughter, Rylae-Ann, has a rare, neurotransmitter disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, we automatically became part of a very small group of parents from…