The Journey of Beautiful Destinations — Richard E. Poulin III

Father’s Day has just passed in the United States, and I appreciate all the wishes and wonderful comments I receive each year. However, this year, I’ve been thinking about the power of grandmas —…

Imagine that arms reach into your warm and dark shelter of solitude and thrust you into blinding lights and chaos. Cool air surrounds you and tickles your skin. As your eyes try to adjust,…

One hour of physical therapy cost us $150. Therapy rooms were filled with swings, mats, blocks, and an array of colorful objects. There’s no space in our house to set up our own, and…

Chimes and notifications began to appear on my phone on the morning of May 20. Messages and questions in my inboxes soon followed. Everyone was excited that the previous day, the Committee for Medicinal…

Our genetics are not written in stone. Who we are and who we will become is not a predetermined story coded in the proteins of our DNA. This may seem like a rewriting of…

Our attempts to feed our daughter, Rylae-Ann, who has aromatic l-amino acid decarboxylase (AADC) deficiency, were never a leisurely process. She fussed and spat out food while we endeavored to feed her. Understandably, it…

I often write about various types of therapy in relation to aromatic l-amino decarboxylase (AADC) deficiency, as I believe they are integral to the well-being of children with this disease. Before gene…

Gene therapy is complete! Now what? The first day after receiving the monumental gift of our daughter partaking in a clinical trial for gene therapy, we asked ourselves this exact question.

A sense of foreboding filled my mind when I first read that there are no approved treatments for aromatic l-amino acid decarboxylase (AADC) deficiency, a condition our 4-year-old daughter, Rylae-Ann, has. I closed my…

Since our family’s first trip to the hospital on that dark and rainy night a few years ago, hospitalizations have always been challenging. Our daughter, Rylae-Ann, who turned 4 this month and has aromatic…

Our daughter, Rylae-Ann, was born in April 2018. By December of that year, she had been diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, and we had received a subsequent verbal agreement to join…

Several years ago, sleepless nights plagued my wife, Judy, and me. This in turn allowed the fog of confusion to seep into every aspect of our life as we searched for answers regarding the…