When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency at just 8 months old, the future felt uncertain. AADC deficiency is a rare genetic disorder that affects the body’s ability to produce important neurotransmitters such as dopamine and serotonin. The result can be…
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People often tell me they cannot believe everything my wife, Judy, and I have managed to juggle over the years. They ask how we keep up with the appointments, therapies, advocacy work, and daily responsibilities. The funny thing is that most days we do not even notice it anymore. Life…
When our daughter, Rylae-Ann, first walked into a classroom at a private international school in Thailand, it felt like a moment we once thought might never come. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare genetic disorder affects the body’s ability to produce…
Most parents dream about the day their child finally sleeps through the night. When our daughter, Rylae-Ann, finally did, my wife, Judy, and I nearly had heart attacks. Rylae-Ann was born with aromatic l-amino acid decarboxylase deficiency (AADC deficiency), a rare genetic disorder that affects the body’s…
Before becoming parents of a child with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I probably would have laughed at the idea of buying a smartwatch for a young child. As educators, we spend a large part of our day trying to convince students…
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,…
Recent Posts
- Taking a step back, so our child with AADC deficiency can move forward
- The long road between a promising idea and a child who needs it
- Gene therapy shows benefits despite limited brain coverage
- Breathing easier after my daughter’s successful first week at school
- We wrote ‘Reawaken’ so no rare disease family has to feel alone