The Journey of Beautiful Destinations
— Richard E. Poulin III

Main graphic for "The Journey of Beautiful Destinations," AADC News, a column by Richard E. Poulin III

Richard E. Poulin III is an American currently working as Head of Middle School for an international school in Bangkok, Thailand. He is also the president of the nonprofit organization Teach RARE. In 2018 his newborn daughter, Rylae-Ann, was diagnosed with the ultra-rare disease, aromatic l-amino acid decarboxylase deficiency. Richard shares his journey and aims to provide caregivers with strategies and tips to improve their family’s journey.

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Stories about rare disease that educate and inspire deserve to be told

As educators, my wife, Judy, and I have always believed books can change lives. They can transport children to new worlds, introduce unfamiliar ideas, and inspire them to dream about what they might become. Sometimes, they can even help change the world. That was…

Richard selfie

This rare disease family showcased its adaptability as floodwaters rose

Just when we thought life was returning to normal, Bangkok decided we needed a swimming pool outside our front door. Our daughter, Rylae-Ann, had just returned to school after recovering from a lung infection and severe bronchitis. After several days at home, she was finally feeling better…

Learning to swallow pills represents a milestone for my daughter

One of the less glamorous benefits of returning to school is apparently getting access to every germ circulating among children. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that affects the brain’s ability to produce important neurotransmitters such as…

Taking a step back, so our child with AADC deficiency can move forward

My wife, Judy, and I have learned that raising our daughter, Rylae-Ann, rarely involves following a straight path. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare neurotransmitter disorder that once prevented her from holding up her head, sitting independently, or speaking. After receiving…

The long road between a promising idea and a child who needs it

In November 2019, my wife, Judy, carried our 18-month-old daughter into National Taiwan University Hospital for an experimental gene therapy. Rylae-Ann couldn’t hold up her head, sit independently, speak, or control her movements. She experienced dystonia and oculogyric crises in which her eyes rolled upward and became…

We wrote ‘Reawaken’ so no rare disease family has to feel alone

Even before our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, began taking meticulous notes. We were not writing a book. We were just trying to understand what was happening to our family. AADC deficiency is an ultra-rare genetic disorder that…

When therapy looks like a video game for our daughter with AADC deficiency

Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that affects the brain’s ability to produce dopamine and serotonin. Before receiving gene therapy in Taiwan in 2019, she couldn’t sit independently, crawl, walk, or speak. Today, she runs, attends school, argues with…

Helpful strategies to mitigate our child’s haircut anxiety

Before our daughter, Rylae-Ann, received gene therapy when she was just 18 months old, she needed her first haircut to make space for the surgery. Most parents might mark this milestone with a special trip to a children’s salon, a tiny envelope for the first curl, and several dozen photographs.