The Journey of Beautiful Destinations – a Column by Richard E. Poulin III

Our daughter’s rebirth day is an annual reminder of hope

Rebirth is a common theme that appears in such classic stories as “Sleeping Beauty,” “Beauty and the Beast,” “A Christmas Carol,” and “The Lion King.” The idea holds a special place in the psyche of humans and, especially, in our rare disease community. In 2018, Rylae-Ann was first admitted…

What does it mean to be a part of a community?

When my wife, Judy, and I discovered that our daughter, Rylae-Ann, has a rare, neurotransmitter disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, we automatically became part of a very small group of parents from around the world. The life-threatening symptoms of AADC…