Finding places to visit with our 6-year-old daughter, Rylae-Ann, has been challenging. But keeping her unique needs in mind when planning makes the process much easier. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare neurotransmitter disease. Its symptoms make it challenging to visit…
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.
Featured Post
When our daughter, Rylae-Ann, first walked into a classroom at a private international school in Thailand, it felt like a moment we once thought might never come. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare genetic disorder affects the body’s ability to produce…
Many parents may dread the summer break from school, but for my wife, Judy, and me, it’s a time to create memorable moments. With our daughter, Rylae-Ann, the greatest of these is when we’re at the beach. Growing up on an island in the Pacific, I’ve always connected with…
After years of struggling to get our daughter, Rylae-Ann, to sit for a haircut, we finally had a tear-free experience. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that affects neurotransmitter production, including dopamine and serotonin. This condition leads to severe…
My daughter, Rylae-Ann, followed me and my wife, Judy, into the mall for routine shopping. We were greeted with whimpers and yelps from various furry friends as soon as we entered. Rylae-Ann needed no encouragement. She went straight to the pen of puppies and grabbed one to…
With popcorn and drinks in hand, I walked with my 5-year-old daughter, Rylae-Ann, into the dimly lit cinema. Because of her limitations, I feared the worst but hoped for the best. My wife, Judy, was the one who began to voice concern about our daughter when she was born. We…
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…
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…
Recent Posts
- Rare disease workshop focuses on patient-centered drug development
- For families in the AADC deficiency community, there is no perfect path
- SK pharmteco leverages its viral vector expertise in gene therapy partnership
- The endurance competition of keeping up with our early-rising daughter
- AAV2 gene therapy vector movement tracked over time in rat brain study