Some may think it’s all right or even supportive to temporarily take a group of struggling students out of the classroom for focused intervention. In all of the schools where I’ve worked, students were pulled out of their general education environment and sent to a room 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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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…
Two parents, unbeknownst to them, were carriers of a rare disease. They were shocked to learn about this genetic fluke after their child was born. From that moment on, life changed for the family, but together, they were able to create a meaningful journey. Sound familiar?…
As a baby, our daughter, Rylae-Ann, had very poor muscle tone. It was barely enough to sustain her body. When she began missing her milestones, the importance of movement became apparent to my wife, Judy, and me. Rylae-Ann was born with the rare disease aromatic l-amino acid…
When my daughter, Rylae-Ann, was born, my wife, Judy, and I celebrated as all new parents do. We took photos and showed her off to family and friends. The excitement focused our attention on what was right. Years later, we realized noticeable symptoms were present after we learned she…
This Rare Disease Day, I spent time reflecting on the future of our community. Will all the hashtags and sharing of our stories on social media translate into results, or is all of this in vain? The answer I’ve settled on is that it matters a lot. In December…
Our daughter, Rylae-Ann, went through a diagnostic journey for eight months until we finally discovered, by chance, what she had. Even after learning she had the rare disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, very little support was available to us. And yet our…
As soon as the car pulls up to the hospital, crying and ear-piercing screaming commence. My daughter arches her back and squeezes her eyes shut. It’s impossible to console her. We must resort to holding her down and forcing her to submit, which doesn’t help us with future visits. Until…
During a workshop for rare disease caregivers, a fellow parent reminded me that while therapy and activities are great topics for discussion, we can’t forget the struggle of simply coping with life and completing routine tasks. Her comment caused me to pause and reflect. It was so true. When I…
Our daughter, Rylae-Ann, has a rare disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. Caring for a rare disease child is multifaceted. It includes specific attention to diet, therapy, and education, and requires a support network. My wife, Judy, and I…
When our family’s rare disease journey began four years ago, we felt alone. Part of the reason was that there wasn’t much information available about our daughter’s condition. But, candidly, it was also because we chose to shut ourselves off from the world. Recently, my wife, Judy,…
On Christmas Eve, I lay with my daughter, Rylae-Ann, in the hospital as she underwent testing as part of a clinical trial. While it was our decision to be there, the quiet floor housed many nervous children and parents who were there out of medical necessity. I began to reflect…
Last October, news began to circulate that Taiwan was reopening for tourism after lifting pandemic restrictions. Usually my family would celebrate an opportunity to travel; instead, this news meant continuing our obligation to contribute data to medical research. On Nov. 13, 2019, our daughter, Rylae-Ann, underwent experimental gene therapy…
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