The Journey of Beautiful Destinations — Richard E. Poulin III

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…

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,…

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…

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…

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…

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…

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…

My wife, Judy, and I recently attended our third awareness day event for aromatic l-amino acid decarboxylase (AADC) deficiency. This year’s annual event, on Oct. 23, was a…

When our daughter, Rylae-Ann, was 3 months old, we began to see signs that something wasn’t right. When that happened, my wife, Judy, and I disappeared from social media. We retreated from our…

The occasional foot or backhand to the face has been worth the benefits of co-sleeping as a family. My wife, Judy, and I were forced to sleep with our daughter, Rylae-Ann, because of the…

My wife, Judy, and I have given several workshops for parents based on our experience caring for our daughter, Rylae-Ann, who has a rare disease called aromatic l-amino acid decarboxylase (AADC) deficiency. During…

Before our daughter, Rylae-Ann, was born, I read books and logged many internet hours learning about parenting. I wanted to be prepared. However, issues like common viral infections were deleted from my mind once…