The Journey of Beautiful Destinations — Richard E. Poulin III

As soon as the car pulls up to the hospital, crying and ear-piercing screaming commence. My daughter arches her back and squeezes her eyes shut. It’s impossible to console her. We must resort to holding her down and forcing…

During a workshop for rare disease caregivers, a fellow parent reminded me that while therapy and activities are great topics for discussion, we can’t forget the struggle of simply coping with life and completing routine tasks. Her comment caused…

Our daughter, Rylae-Ann, has a rare disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. Caring for a rare disease child is multifaceted. It includes specific attention to diet, therapy, and education, and requires…

When our family’s rare disease journey began four years ago, we felt alone. Part of the reason was that there wasn’t much information available about our daughter’s condition. But, candidly, it was also because we chose…

On Christmas Eve, I lay with my daughter, Rylae-Ann, in the hospital as she underwent testing as part of a clinical trial. While it was our decision to be there, the quiet floor housed many nervous children and parents…

Last October, news began to circulate that Taiwan was reopening for tourism after lifting pandemic restrictions. Usually my family would celebrate an opportunity to travel; instead, this news meant continuing our obligation to contribute data to medical research.

While the term rare disease refers to an uncommon disorder, more than 7,000 rare diseases affect an estimated 30 million people in the United States alone. That means almost one in 10 Americans are living…

Before all the New Year’s resolution posts begin to be smeared across the internet, inducing feelings of guilt and shame, I want to preempt all that with a personal problem and solution. First, you’re amazing! Parents…

In December 2018, my wife and I discovered our daughter, Rylae-Ann, had a rare, genetic disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. We didn’t know much at the time, but we quickly learned there…

My wife and I enrolled our daughter, Rylae-Ann, who has aromatic l-amino acid decarboxylase (AADC) deficiency, in a one-year clinical trial that required her to stay in Taiwan. We had accepted new jobs in Singapore, so…

It would be impossible to name all of the people and organizations that have helped us over the last four years. I know that you did it from your heart and never expected a thank-you, but it is important…

When the holidays approach, we scour department stores to find an outfit our 4-year-old daughter, Rylae-Ann, can wear so that she looks great in our seasonal family photos. She accommodates us by wearing all of the clothes we…