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The clock struck 3:10 in the afternoon, and the bell let out a final scream. I waved goodbye and gave high-fives to eager students. The middle of June marks the end of my academic year as principal and the start of a long break, for which I’ve dedicated several weeks…

We prepared each meal with diligent slicing, dicing, and pureeing. Each menu and food item was selected thoughtfully for its necessary nutrition. With each spoonful of food, however, anxiety filled our hearts that this one might send our daughter, Rylae-Ann, back to the emergency room. My wife and I did…

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.

Instead of asking what’s the matter with my child, ask what matters to my child. What do I need for them to be happy and successful? After our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, the traditional milestones by age went out the window.

It took years of persuading our daughter, Rylae-Ann, to hop into the curved seat of the playground swing on her own and enjoy the freedom and weightlessness of swinging. When she turned 5 in April, we filmed and shared this significant achievement with family and friends after she finally…

As a child, I hated expecting the same old routine. The best days were when something unexpected happened. Excitement and thrill induced wonderful feelings and were seared into my memory. Those are still the standout moments for me when I reminisce about my youth. As an educator, I now know…

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…

Before my daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, I had no idea about the size and scope of the rare disease community. When I entered this new world, information and resources were difficult to find. But the power of celebrities and other public…

When our daughter, Rylae-Ann, was 18 months old, my wife, Judy, and I learned she had a rare disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. As of 2020, only about 135 cases of AADC deficiency had been described worldwide. Thankfully, though, a vast network…

My wife, Judy, and I had stayed up late for meetings and written papers advocating for the approval of Upstaza (eladocagene exuparvovec), so we celebrated when the news was finally made public. In November, the gene therapy formerly known as PTC-AADC was approved in the U.K. to treat…