The Journey of Beautiful Destinations — Richard E. Poulin III

My wife, Judy, and I have attended webinars, conferences, and other events to share our perspective on our daughter’s experience with aromatic l-amino acid decarboxylase (AADC) deficiency. We have written letters,…

My wife, Judy, and I have dedicated our professional lives to educating children. Books are an essential tool, but I never imagined that we would become authors. When our daughter, Rylae-Ann, was born in…

Our daughter, Rylae-Ann, quickly prepared a selection of delicious ice cream and scooped some onto a cone. She excitedly called out her friend’s name and passed him her colorful concoction while shouting a series…

My “Journey of Beautiful Destinations” column is designed for caregivers. In each post, I consider the nuances and specific challenges faced by families who are affected by aromatic l-amino acid…

My daughter, Rylae-Ann, chucked her cup and its contents of sweet juice across the room. As the plastic cup bounced to a standstill, it took every ounce of patience not to respond with anger,…

Glow sticks danced in the air as I snapped pictures of us in our striped socks. The fun day was my family’s first event dedicated to rare disease awareness, but while it made for…

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…

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…

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…

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…

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…

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…