When the screams shake me from my slumber, there’s no option to hit snooze — not as a parent of a child with aromatic l-amino acid decarboxylase (AADC) deficiency. Even my wife, Judy, who once slept through anything, has long since abandoned that luxury. Mornings are hectic…
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
As we step into 2026, our journey with our daughter, Rylae-Ann, and aromatic L-amino acid decarboxylase (AADC) deficiency continues, but it looks very different from how it once did. For several years, our entire world revolved around her well-being. Every decision, every plan, every ounce of energy…
Healthcare Science Week, continuing here in Thailand through March 14, is an annual event that originated in the U.K. As part of our observance, we engage students by having them explore and share news stories that capture their interest. This year I’ll set the stage for that by sharing a…
When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I didn’t just adjust our schedule; we threw it out and built a brand-new one from scratch. Coffee-fueled and determined, we reshaped our daily lives to meet her needs while…
My wife, Judy, and I are thrilled to introduce the second book in our children’s series, a journey crafted with love, creativity, and a purpose-driven formula to inspire young minds. After the success of our first book, we knew we’d found a way to captivate children while empowering them. Our…
When my wife, Judy, and I learned there was another family in Thailand with a child who had been diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, we were overcome with mixed emotions. On the one hand, we were excited to know we weren’t alone on this…
For our family, 2024 was a year of milestones and overcoming challenges. It was a good year, and progress was OK. But ever since our daughter, Rylae-Ann, was diagnosed with the rare disease aromatic l-amino acid decarboxylase (AADC) deficiency, “good” and “OK” have not been enough for…
The day before our daughter, Rylae-Ann, recently departed Thailand to visit family in the U.S., we opened Christmas presents together. My wife, Judy, had prepared several thoughtful gifts, each carefully chosen to balance Rylae-Ann’s developmental goals with fun and engagement. Rylae-Ann was born with aromatic l-amino acid…
December had only just begun when my wife, Judy, and I decided Santa should come early for our daughter, Rylae-Ann. Over the years, we’ve adapted holidays and events to make them more meaningful for our family, but this year we decided to try something new — and a bit challenging.
On Christmas Day in 2018, our lives changed forever when our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency. My wife, Judy, wondered if she’d ever hold our hands and walk along the beach like we’d dreamed. Despite the dismal prognosis…
When our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, we were handed a long list of symptoms that felt more like a set of instructions on what she couldn’t do. It was devastating. Bubble baths were a fun bonding time for…
Thanksgiving is a cherished family holiday, and this year, we have so much good news to celebrate and be thankful for. However, in late October, we learned the sad news that our daughter’s grandpa had passed away. Tim Hergenroether was a proud U.S. Marine who served his country for more…
Six years ago, on Nov. 13, 2019, our daughter Rylae-Ann received a second chance at life. Every year since, we’ve celebrated it as her “Reborn Day,” when we reflect and remember how far she’s come. This year’s celebration, however, was an extraordinary moment of personal and national significance. When Rylae-Ann…
Recent Posts
- Nonprofits partner to bring therapy for Wiskott-Aldrich syndrome to US
- We resolve for the new year to spend more time with family
- AI model popEVE predicts likelihood of harm from ultra-rare DNA mutations
- Our holiday trip is a symbol of our daughter’s journey after gene therapy
- NORD adds 7 sites in 5 states as Rare Disease Centers of Excellence