Richard E. Poulin III, Columnist —

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 (AADC) deficiency. Richard shares his journey and aims to provide caregivers with strategies and tips to improve their family's journey.

Articles by Richard Poulin III

Naughty behavior is a luxury with an AADC-deficient child

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 luxury we’re fortunate to deal with. During an online discussion with other parents whose children received…

Clinical trials pose many challenges for rare disease families

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, aromatic l-amino acid decarboxylase (AADC) deficiency. As our cheers subsided, questions began to fill the air.

Therapy vacations are just what the doctor ordered

Parenting is already a full-time job, but the list of tasks mounts for parents of children with health challenges. After work during the week and on weekends, my wife and I operate as a team to coordinate our 5-year-old daughter Rylae-Ann’s care and therapy sessions, as she…