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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…

There is a space no one prepares you for. It is not the crisis of diagnosis, nor the triumph of breakthrough treatment. It is something quieter and, in many ways, more complicated. My wife and I felt it most recently while watching our daughter, Rylae-Ann, interact with her cousin, who…

For our family, the Chinese New Year has always been more than just a date on the calendar. It’s a reminder for us to pause, reflect, clear out the clutter — both literal and emotional — and move forward with hope. My wife, Judy, is from Taiwan, so these…