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Before we had a diagnosis, before we understood words like “neurotransmitters” or “genetic mutations,” my wife, Judy, and I were just doing what new parents are told to do. We put our daughter on her stomach and encouraged her to lift her head. Tummy time. Simple in theory. Not so…

In the past, I’ve written about our family’s “therapy vacations.” Trips where every activity had a purpose, and every moment was designed to build strength, coordination, or communication. Our recent vacation felt different. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC)…

There are moments in parenting that feel small when they happen, but later you realize they carry the weight of everything you have been working toward. For me, one of those moments happened at a bowling alley. My daughter, Rylae-Ann, was born with a rare disease called…

When NASA launches a rocket, most people watch for a few minutes, feel a sense of awe, and move on with their day. My wife, Judy, saw a week of lessons. That is the difference between traditional schooling and intentional learning. One passes by moments. The other builds entire experiences…

There was a stretch of time when I genuinely thought I was going insane. Night after night, the crying came in waves that instantly snapped my wife, Judy, and me from our sleep, hearts racing, and already exhausted from the 24-hour care we provided during the day. Our daughter,…

During my teacher training, one concept stuck with me: the first critical period of brain development occurs very early in life, between ages 2 and 7. At the time, it felt like one of those powerful, slightly intimidating facts professors love to emphasize. You nod, write it…

One of the most powerful things a child can learn is how to ask good questions. Questions are how children make sense of the world, test ideas, and discover new possibilities. As parents and educators, we often focus on teaching children answers. Yet the ability to ask thoughtful questions may…

When people hear about a rare disease, they often assume they will never encounter it. The word “rare” suggests distance — something that happens somewhere else, to someone else. The truth is very different. In the U.S., about 1 in 10 people live with a rare disease. While exact numbers…

I stood in front of a room full of middle school students on Feb. 27, the day before Rare Disease Day, and asked a simple question: “How many of you think you have ever met someone with a rare disease?” A few hands slowly went up. Most did not. Those…

There are certain sounds that instantly wake a parent from the deepest sleep, especially for parents of children with aromatic l-amino acid decarboxylase (AADC) deficiency. A cough. A thud. Silence even feels suspicious to a parent of a child with a rare disease. Then there is the…