The Journey of Beautiful Destinations — Richard E. Poulin III

Summer sometimes has a way of sneaking up on us. One day, we’re all talking about school ending, vacations, swimming pools, and ice cream. The next, it seems, we step outside and it feels like someone opened an oven door in our faces. For most families, summer means sunscreen, water…

My wife, Judy, and I recently traveled back to Taiwan so that our daughter could continue contributing data to her gene therapy clinical trial, and we got to catch up with many of the doctors who have been part of her journey. We also met several families whose children recently…

Six and a half years ago, my wife, Judy, and I placed our trust in a medical team in Taiwan and handed our daughter, Rylae-Ann, over for a surgery we hoped would change her future. Today, we continue returning to Taiwan, not because Rylae-Ann needs another operation, but because she…

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,…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency at just 8 months old, the future felt uncertain. AADC deficiency is a rare genetic disorder that affects the body’s ability to produce important neurotransmitters such as dopamine and serotonin. The result can be…

People often tell me they cannot believe everything my wife, Judy, and I have managed to juggle over the years. They ask how we keep up with the appointments, therapies, advocacy work, and daily responsibilities. The funny thing is that most days we do not even notice it anymore. Life…

When our daughter, Rylae-Ann, first walked into a classroom at a private international school in Thailand, it felt like a moment we once thought might never come. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare genetic disorder affects the body’s ability to produce…

Most parents dream about the day their child finally sleeps through the night. When our daughter, Rylae-Ann, finally did, my wife, Judy, and I nearly had heart attacks. Rylae-Ann was born with aromatic l-amino acid decarboxylase deficiency (AADC deficiency), a rare genetic disorder that affects the body’s…

Before becoming parents of a child with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I probably would have laughed at the idea of buying a smartwatch for a young child. As educators, we spend a large part of our day trying to convince students…

Before we had a diagnosis, before we understood words like “neurotransmitters” or “genetic mutations,” my wife, Judy, and I were just doing what new parents are told to do. We put our daughter on her stomach and encouraged her to lift her head. Tummy time. Simple in theory. Not so…

In the past, I’ve written about our family’s “therapy vacations.” Trips where every activity had a purpose, and every moment was designed to build strength, coordination, or communication. Our recent vacation felt different. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC)…