One of the less glamorous benefits of returning to school is apparently getting access to every germ circulating among children. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that affects the brain’s ability to produce important neurotransmitters such as…
Discussion
Nearly seven years ago, my wife, Judy, and I handed our daughter over to a surgical team in Taiwan for an experimental gene therapy. It was November 2019. Rylae-Ann was 18 months old and living with aromatic l-amino acid decarboxylase, or AADC, deficiency. We had spent months…
Discussion
Editor’s note: This column includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention…
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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