It was bound to happen. After six years of dodging it, our daughter, Rylae-Ann, finally caught COVID-19. For my wife, Judy, and me, this triggered a rush of emotions, including fear, worry, and, ultimately, gratitude. Rylae-Ann isn’t like most kids. At just 8 months old, she was diagnosed with…
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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There are moments in parenting that feel small when they happen, but later you realize they carry the weight of everything you have been working toward. For me, one of those moments happened at a bowling alley. My daughter, Rylae-Ann, was born with a rare disease called…
I’ve always struggled to find the right words for what I’m about to describe. Maybe it’s because it feels too vulnerable, or maybe I haven’t fully unpacked the emotions. But as another school year comes to a close, with all the celebration, the final curtain calls, and the proud goals…
When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I were overwhelmed and unsure where to begin. Initially, our primary concern was survival. After she received gene therapy at 8 months old, we could finally ask the next big question: How…
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…
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.
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