On Halloween, our daughter, Rylae-Ann, joined approximately 200 children for a school parade and carnival. Costumes, laughter, excitement, and the unmistakable sound of hundreds of children having fun filled the campus. For most families, this might seem like another fun school event. For us, it represented something much bigger. It…
Discussion
“Don’t do everything for your child.” As an educator and father, I have heard this advice countless times and even given it. The reasoning is sound. Children need opportunities to struggle, solve problems, and develop independence. However, when your child has a rare neurological disorder that affects her ability to…
Discussion
I have become quite good at managing calendars. Between being a school principal, running a nonprofit, writing articles, and being a husband and father, my calendar looks like a complicated game of Tetris. Somehow, I keep finding ways to squeeze another block into an already crowded space.
Aromatic l-amino acid decarboxylase (AADC) deficiency is a genetic and neurometabolic disease that affects the nervous system. Learn more about the disease here.
AADC deficiency can affect many aspects of a person’s life, including mobility, breathing, sleeping, and eating. Learn more here about different ways to manage the condition, adapt, and handle everyday tasks.
There is not yet a cure for AADC deficiency, but there are approved treatments that can help manage the condition, as well as experimental treatments in the pipeline. Learn more about treating the disease here.
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