For parents of children with rare diseases, progress is rarely linear. Each milestone is hard-earned, often built upon months or even years of trial, error, and perseverance. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare genetic disease affects neurotransmitter production, resulting…
For most parents, watching their child take their first steps is a moment of joy and celebration. For my wife, Judy, and me, it was also a moment that followed countless hours of patience, experimentation, and teamwork. The journey to walking for our daughter, Rylae-Ann, wasn’t a straightforward path because…
As families across Thailand gathered to ring in the Thai New Year during Songkran with water buckets, laughter, and good wishes, our family returned to the celebrations with friends for a day, but then went on a short family getaway. It was more about reflection…
Every April, as the blazing sun rises higher in the Thai sky, buckets are filled, water guns are loaded, and smiles stretch wide across faces. For most families, Songkran, the Thai New Year, is celebrated by cooling off in the summer heat with laughter, reunions, and playful water fights in…
Friday afternoon was winding down, and I was at my desk, feeling lightheaded. Or at least, I thought I was until I noticed my water bottle trembling. The ripples on the surface confirmed it wasn’t just fatigue from a long week. The floor beneath me swayed. It was an earthquake.
When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, our world changed instantly. Like many parents receiving this life-altering news, my wife, Judy, and I were overwhelmed with questions, fears, and an urgent need for connection. We immediately sought out other families living with the…
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…
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…
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