The Journey of Beautiful Destinations — Richard E. Poulin III

Aromatic l-amino acid decarboxylase (AADC) deficiency is a rare genetic disease with only about 135 cases seen worldwide since it was identified in 1990. So where do we go…

Meeting another father whose daughter has a rare disease always prompts a free-flowing and earnest discussion. When it happens, I don’t refrain from opening up. I had an eye-opening experience during a recent meeting…

My full and undivided attention was dedicated to navigating the stroller over cobblestone sidewalks. When I reached the end, I executed a 180-degree motion so that the back wheels descended the high curb first…

Warm water flows across our child’s scalp and soothes her. Other times, the water tickles her and makes her feel anxious. Over time, these observations supported us in making her bathing experience pleasant. Children…

Our daughter throws a toy across the room or whines about not having an iPad before plopping her hands in her food at dinnertime. While these frustrating behaviors are an annoyance, they’re also a…

While holding my daughter Rylae-Ann’s hands like a puppeteer, I allowed her fingers to touch the wet snout of a horse. She let out a giggle. That was the moment her love for animals…

The clock struck 3:10 in the afternoon, and the bell let out a final scream. I waved goodbye and gave high-fives to eager students. The middle of June marks the end of my academic…

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…