Columns

Our daughter, Rylae-Ann, failed to meet her milestones at 3 months old. From that point on, she was limp and barely moving. However, she was still very much full of life, and my wife, Judy, and I would help her to still experience the world. Even before we learned Rylae-Ann…

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, articles, and books advocating for research and treatment. Now, achieving our greatest…

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 2018, we surrounded her with books and read to her daily. However, when she was 3…

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 of words to explain what she’d created. Rylae-Ann was born with a rare disease known as…

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 decarboxylase (AADC) deficiency. However, I also communicate with doctors and healthcare professionals to share insight with…

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, but rather thoughtful, positive language. Rylae-Ann Poulin, 5, practices properly holding a cup and drinking…

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 great photos, it wasn’t a day of action for us. We were still newbies at that…

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, Judy, and I to work as a team to keep our…

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 be, but it was an exciting milestone for us. Our daughter,…

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 going on the swing at the time. There was little she…