As my daughter’s shaky hand brought the food to her mouth, sauce and pieces of food stuck to her long, curly hair. Despite her fixating on the fork and sticking out her tongue for extra support, Rylae-Ann’s aromatic l-amino acid decarboxylase (AADC) deficiency symptoms were making…
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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One of the greatest lessons my wife, Judy, and I have learned through raising our daughter, Rylae-Ann, is that there is a big difference between helping a child succeed and teaching a child to be helpless. Our daughter was born with aromatic l-amino acid decarboxylase (AADC) deficiency,…
As I carried my daughter, Rylae-Ann, to bed one night over Christmas vacation, I noticed my arms shake beneath her. There’s no denying it, the days of her being a baby, a toddler, and even a preschooler are over. I stayed that night for a few…
Life as a rare disease family can feel isolating at times. Not many people can relate to our challenges or accommodate our unusual needs. However, isolation can limit powerful opportunities for a child’s learning and development. My wife, Judy, and I were an outgoing and adventurous couple who enjoyed…
Judy, my wife, and I sat slumped on a bench in a random park that we’d stumbled upon as we walked the cold streets of Taiwan on the night of Christmas Eve 2018. Somehow, we thought a bottle of vodka and juice would help to cool the burning we felt…
Social networks offer a public platform for people to share their ideas, but authenticity can be a challenge to identify amid the abundant content available. As a parent of a child with a rare and incurable disease, I could be misled by the lofty claims and health trends that show…
Even before our daughter, Rylae-Ann, had gene therapy, we knew that she would require immediate and intensive intervention due to her rare disease. There was little guidance on what to do, but my wife, Judy, and I realized we’d have to drastically change our lifestyle as…
The road to potty training our daughter was one of the most difficult journeys my wife, Judy, and I set out on. More significant challenges took precedence before this, but potty training was an inevitable milestone we knew we would eventually have to tackle. When our daughter, Rylae-Ann, was born,…
Rebirth is a common theme that appears in such classic stories as “Sleeping Beauty,” “Beauty and the Beast,” “A Christmas Carol,” and “The Lion King.” The idea holds a special place in the psyche of humans and, especially, in our rare disease community. In 2018, Rylae-Ann was first admitted…
When my wife, Judy, and I discovered that our daughter, Rylae-Ann, has a rare, neurotransmitter disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, we automatically became part of a very small group of parents from around the world. The life-threatening symptoms of AADC…
My wife, Judy, and I recently attended our third awareness day event for aromatic l-amino acid decarboxylase (AADC) deficiency. This year’s annual event, on Oct. 23, was a live video event on Facebook that showcased even more families, including our daughter, Rylae-Ann, who has…
When our daughter, Rylae-Ann, was 3 months old, we began to see signs that something wasn’t right. When that happened, my wife, Judy, and I disappeared from social media. We retreated from our circle of friends into the darkness of our living room. Thankfully, our friends didn’t give up…
The occasional foot or backhand to the face has been worth the benefits of co-sleeping as a family. My wife, Judy, and I were forced to sleep with our daughter, Rylae-Ann, because of the debilitating symptoms of aromatic l-amino acid decarboxylase (AADC) deficiency. Co-sleeping is when…
Recent Posts
- FDA draft guidance aims to streamline gene therapy development
- Closing the developmental gap: How we’re helping our daughter succeed
- Harnessing the power of books early in our daughter’s AADC deficiency journey
- New proposal seeks to fast-track rare disease treatments in UK
- The impossible became the new normal after we accepted AADC deficiency