While the term rare disease refers to an uncommon disorder, more than 7,000 rare diseases affect…
Articles by Richard E. Poulin III
Before all the New Year’s resolution posts begin to be smeared across the internet, inducing feelings of guilt and shame,…
In December 2018, my wife and I discovered our daughter, Rylae-Ann, had a rare, genetic disease known as…
My wife and I enrolled our daughter, Rylae-Ann, who has aromatic l-amino acid decarboxylase (AADC) deficiency, in…
It would be impossible to name all of the people and organizations that have helped us over the last four…
When the holidays approach, we scour department stores to find an outfit our 4-year-old daughter, Rylae-Ann, can wear so…
In a sea of more than 7,000 rare diseases, it is remarkable to have a day to call our own.
Our first Christmas Eve as a family was spent in a park. My wife, Judy, and I sat on a…
Once we finally knew what our daughter, Rylae-Ann, had, we also learned that genetically, she wouldn’t be able to move.
Rylae-Ann was born by an emergency cesarean section. As Mom was stitched up and came off the anesthesia, I remained…