As Christmas approached, Rylae-Ann practiced jingles and dances onstage while decked out in a colorful costume. When showtime came, however, crying and anxiety ensued. After much prodding, Rylae-Ann (center foreground in this manipulated photo) successfully performs her Christmas celebration in front of an audience. (Photo by…
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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There were many times when my wife, Judy, and I almost lost our daughter, Rylae-Ann. The early years of her life were filled with medical emergencies, unanswered questions, and moments when the future felt painfully uncertain. Aromatic l-amino acid decarboxylase (AADC) deficiency is not a journey anyone…
My daughter, Rylae-Ann, was born with a rare and debilitating genetic disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, which meant countless trips to the emergency room and a battery of tests. Each time we’d enter the hospital, the only thought that crossed my mind was…
A supportive and loving community has sprung up around my daughter, Rylae-Ann. She says hello to everyone she meets on her way to school and makes it home without incident, all the while grinning and preparing to tell her tale when I return home from work. What else could…
The sun hadn’t even risen yet, but my daughter, Rylae-Ann, was already melting down about changing out of her pajamas. By the time we got downstairs to start breakfast, her mood had only soured. By noon, everyone in the house had veins popping out of their heads…
As I straightened my tie in the mirror, I could hear my daughter’s giggles getting progressively louder as she stumbled her way to my bedroom. When I heard her finally enter, I glanced over my shoulder and was greeted with a delightful scene that looked like a pink baby elephant…
As I tried desperately to fall asleep after a long day, my daughter’s fingertips danced around my jawline. They explored over my eyebrows and across my lips. In the morning, her investigation resumed, finding my nostrils and pulling my eyelids open. My daughter, Rylae-Ann, is diagnosed with…
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…
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