My daughter, Rylae-Ann, is a beautiful, bright little girl with a rare genetic condition called aromatic l-amino acid decarboxylase (AADC) deficiency. If you’ve never heard of it, you’re not alone. Most doctors haven’t, either. It’s a condition that affects the production of the neurotransmitters…
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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During my teacher training, one concept stuck with me: the first critical period of brain development occurs very early in life, between ages 2 and 7. At the time, it felt like one of those powerful, slightly intimidating facts professors love to emphasize. You nod, write it…
During a recent visit from another parent whose child has aromatic L-amino acid decarboxylase (AADC) deficiency, a small comment made my wife, Judy, and I pause. “Your house looks like a kid’s gym!” she said with a laugh. We looked around, and she was right. Soft blocks…
With just two weeks left in the school year, my wife, Judy, and I find ourselves reflecting deeply on how far our daughter, Rylae-Ann, has come. It feels like just yesterday we were coaxing her through tearful goodbyes at the classroom door, navigating the daily challenge of separation anxiety and…
As the summer sun shines brightly, it presents an excellent opportunity for families to make plans that can significantly affect the social development of children with aromatic l-amino acid decarboxylase (AADC) deficiency and other rare diseases. For parents like Judy and me, the summer months aren’t just about relaxation.
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…
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