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…
The Journey of Beautiful Destinations — Richard E. Poulin III
Richard E. Poulin III is an American currently working as Head of Middle School for an international school in Bangkok, Thailand. He is also the president of the nonprofit organization Teach RARE. In 2018 his newborn daughter, Rylae-Ann, was diagnosed with the ultra-rare disease, aromatic l-amino acid decarboxylase deficiency. Richard shares his journey and aims to provide caregivers with strategies and tips to improve their family’s journey.
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I stood in front of a room full of middle school students on Feb. 27, the day before Rare Disease Day, and asked a simple question: “How many of you think you have ever met someone with a rare disease?” A few hands slowly went up. Most did not. Those…
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…
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 extra support, Rylae-Ann’s aromatic l-amino acid decarboxylase (AADC) deficiency symptoms were making…
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 toddler, and even a preschooler are over. I stayed that night for a few…
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