Our attempts to feed our daughter, Rylae-Ann, who has aromatic l-amino acid decarboxylase (AADC) deficiency, were never a leisurely process.
Articles by Richard E. Poulin III
I often write about various types of therapy in relation to aromatic l-amino decarboxylase (AADC) deficiency, as I believe…
Gene therapy is complete! Now what? The first day after receiving the monumental gift of our daughter partaking in a…
A sense of foreboding filled my mind when I first read that there are no approved treatments for aromatic l-amino…
Since our family’s first trip to the hospital on that dark and rainy night a few years ago, hospitalizations have…
Our daughter, Rylae-Ann, was born in April 2018. By December of that year, she had been diagnosed with aromatic l-amino…
Several years ago, sleepless nights plagued my wife, Judy, and me. This in turn allowed the fog of confusion to…
As the plane descended, my wife, Judy, and I peered out the window. We could see some city lights sprinkled…
Earlier this year, CheckRare, a learning platform for healthcare professionals and rare disease patients, held a…
When my daughter, Rylae-Ann, was about 3 months old, she wasn’t meeting her milestones. Then came the “spells,” which we…