The Journey of Beautiful Destinations — Richard E. Poulin III

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 now held annually on Oct.

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, we had a clue what…

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 laughed, her body moved, her…

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. I instinctively snuggled up to…

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, but I couldn’t help but…

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 my responses. Is defending my…

Today, our daughter, Rylae-Ann, sits at a piano and explores the sounds she can make, then jumps off the stool and heads to the xylophone to grab a mallet, which makes the magical sounds flow out.

After work a week ago, on a Monday, it was straight home. We grabbed our packed suitcases and headed for the airport. We arrived with an hour to spare, but then we had time to let the anticipation sink…

At 5:30 a.m., I quietly sneak out of bed, wash, dress, and straighten my tie. As I finish getting myself ready, my wife and daughter wake up to start their morning routine. With kisses all around, I make my…

Once Singapore’s warm, tropical sun had set, a cool breeze became noticeable. With only the palm trees swaying above my head, I could think clearly. I used to reserve this time for high-intensity sports. Now I use it to…

When I don’t know how to do something, I’m the type of person to go figure it out. YouTube has taught me skills ranging from fixing a leaky faucet to trail running. My wife and I applied the same…

Our daughter’s first three years of life were spent in a hospital. The first year involved diagnostic testing and fighting to thrive due to severe symptoms of aromatic l-amino acid decarboxylase (AADC) deficiency. The second…