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

The Benefits of Massage for AADC-deficient Children

Beneath my daughter’s skin, I know there are muscles, and deeper still is the desire to move. I know it’s there, but despite my willing her to move, she can only stare back. Sometimes I cannot meet her eyes, and my stomach twists, knowing I have no answers for her.

Our Family Values the Power of Grandmas

Father’s Day has just passed in the United States, and I appreciate all the wishes and wonderful comments I receive each year. However, this year, I’ve been thinking about the power of grandmas — the family members who have the greatest experience of being a parent. In my case, the…

Our Journey Is Not Determined by Our Genetic Code

Our genetics are not written in stone. Who we are and who we will become is not a predetermined story coded in the proteins of our DNA. This may seem like a rewriting of the old nature versus nurture debate, yet I was recently reminded that we make our own…

Supporting Weight Gain in AADC-deficient Children

Our attempts to feed our daughter, Rylae-Ann, who has aromatic l-amino acid decarboxylase (AADC) deficiency, were never a leisurely process. She fussed and spat out food while we endeavored to feed her. Understandably, it was a difficult task for her to complete. We tried our best not to turn each…

Helping Our Daughter Push Through Multiple Therapy Sessions

I often write about various types of therapy in relation to aromatic l-amino decarboxylase (AADC) deficiency, as I believe they are integral to the well-being of children with this disease. Before gene therapy, the accomplishments our 4-year-old daughter, Rylae-Ann, made during her therapy sessions prepared her for…

First Exercises After Gene Therapy

Gene therapy is complete! Now what? The first day after receiving the monumental gift of our daughter partaking in a clinical trial for gene therapy, we asked ourselves this exact question. There were no handbooks on what to do after this revolutionary procedure. We began working with…