The Journey of Beautiful Destinations — Richard E. Poulin III

While the term rare disease refers to an uncommon disorder, more than 7,000 rare diseases affect an estimated 30 million people in the United States alone. That means almost one…

Before all the New Year’s resolution posts begin to be smeared across the internet, inducing feelings of guilt and shame, I want to preempt all that with a personal problem and solution. First, you’re…

In December 2018, my wife and I discovered our daughter, Rylae-Ann, had a rare, genetic disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. We didn’t know much at the time,…

My wife and I enrolled our daughter, Rylae-Ann, who has aromatic l-amino acid decarboxylase (AADC) deficiency, in a one-year clinical trial that required her to stay in Taiwan. We had accepted…

It would be impossible to name all of the people and organizations that have helped us over the last four years. I know that you did it from your heart and never expected a…

When the holidays approach, we scour department stores to find an outfit our 4-year-old daughter, Rylae-Ann, can wear so that she looks great in our seasonal family photos. She accommodates us by wearing…

In a sea of more than 7,000 rare diseases, it is remarkable to have a day to call our own. In 2020, the AADC Family Network established AADC Deficiency Awareness Day, which is…

Our first Christmas Eve as a family was spent in a park. My wife, Judy, and I sat on a bench, trying to comprehend what was happening to our daughter, Rylae-Ann. In December 2018,…

Once we finally knew what our daughter, Rylae-Ann, had, we also learned that genetically, she wouldn’t be able to move. She would most likely be bedridden, and there was no treatment. However, when she…

Rylae-Ann was born by an emergency cesarean section. As Mom was stitched up and came off the anesthesia, I remained with a crying, screaming baby. As a new dad, I didn’t have a clue.

In September 2021, a post came across my Facebook news feed about a freelance writing position for AADC News. My wife, Judy, and I were still very much isolated due to our daughter’s condition,…

It may be an ill-formed sentence someone blurts or deliberate malice. Either way, any negativity expressed about our daughter, spoken or unspoken, goes straight to our hearts. My skin is thick, and I calculate…