The Journey of Beautiful Destinations — Richard E. Poulin III

We prepared each meal with diligent slicing, dicing, and pureeing. Each menu and food item was selected thoughtfully for its necessary nutrition. With each spoonful of food, however, anxiety filled our hearts that this…

Years ago, my wife, Judy, and I received the news that our daughter’s clinical trial application had been approved, allowing her to receive an experimental therapy for her rare and life-threatening disease,…

Instead of asking what’s the matter with my child, ask what matters to my child. What do I need for them to be happy and successful? After our daughter, Rylae-Ann, was diagnosed with…

It took years of persuading our daughter, Rylae-Ann, to hop into the curved seat of the playground swing on her own and enjoy the freedom and weightlessness of swinging. When she turned 5…

As a child, I hated expecting the same old routine. The best days were when something unexpected happened. Excitement and thrill induced wonderful feelings and were seared into my memory. Those are still the…

Parenting is already a full-time job, but the list of tasks mounts for parents of children with health challenges. After work during the week and on weekends, my wife and I…

Before my daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, I had no idea about the size and scope of the rare disease community. When I entered this new…

When our daughter, Rylae-Ann, was 18 months old, my wife, Judy, and I learned she had a rare disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. As of 2020,…

My wife, Judy, and I had stayed up late for meetings and written papers advocating for the approval of Upstaza (eladocagene exuparvovec), so we celebrated when the news was finally made public. In November,…

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…

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…

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,…