The Journey of Beautiful Destinations — Richard E. Poulin III

My “Journey of Beautiful Destinations” column is designed for caregivers. In each post, I consider the nuances and specific challenges faced by families who are affected by aromatic l-amino acid…

My daughter, Rylae-Ann, chucked her cup and its contents of sweet juice across the room. As the plastic cup bounced to a standstill, it took every ounce of patience not to respond with anger,…

Glow sticks danced in the air as I snapped pictures of us in our striped socks. The fun day was my family’s first event dedicated to rare disease awareness, but while it made for…

Chinese New Year celebrations are a two-week extravaganza filled with food and excitement that can overwhelm the senses. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This…

One minute, it was a slow coo, and the next, a high-pitched scream. It may have sounded obnoxious to a random observer, but for us, it was speech. It was a long way from…

I placed travel neck pillows around my daughter, Rylae-Ann, to make sure she was snug in the swing. I slowly began to push her. Immediately, she started snorting and giggling. Rylae-Ann didn’t have…

As my daughter’s shaky hand brought the food to her mouth, sauce and pieces of food stuck to her long, curly hair. Despite her fixating on the fork and sticking out her tongue for…

As I carried my daughter, Rylae-Ann, to bed one night over Christmas vacation, I noticed my arms shake beneath her. There’s no denying it, the days of her being a baby, a…

Life as a rare disease family can feel isolating at times. Not many people can relate to our challenges or accommodate our unusual needs. However, isolation can limit powerful opportunities for a child’s learning…

Judy, my wife, and I sat slumped on a bench in a random park that we’d stumbled upon as we walked the cold streets of Taiwan on the night of Christmas Eve 2018. Somehow,…

Social networks offer a public platform for people to share their ideas, but authenticity can be a challenge to identify amid the abundant content available. As a parent of a child with a rare…

Even before our daughter, Rylae-Ann, had gene therapy, we knew that she would require immediate and intensive intervention due to her rare disease. There was little guidance on what to do, but my…