When our daughter, Rylae-Ann, was just 3 months old, the first signs of aromatic l-amino acid decarboxylase (AADC) deficiency began to emerge. At the time, we were consumed by only one thought: progress. As the months went by, the absence of progress became painfully clear. The gap between what…
Columns
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…
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…
Recent Posts
- California’s CIRM aims to speed therapies’ move from lab to clinic
- In the Year of the Horse, therapy, traditions, and a little magic converge
- Pact to develop 3D models could help speed new rare disease treatments
- The power of play: How game night became our daughter’s best therapy
- MRI-guided gene therapy targets serotonin in AADC deficiency