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Creating lasting bonds with AADC deficiency families

Once again, my family took a summer trip to Taipei, Taiwan, to contribute data to a clinical trial. Our daughter, Rylae-Ann, is participating in a study of the long-term efficacy of a treatment for aromatic l-amino acid decarboxylase (AADC) deficiency. Our previous trip last summer provided…

Why teamLab is perfect for our child with AADC deficiency

Finding places to visit with our 6-year-old daughter, Rylae-Ann, has been challenging. But keeping her unique needs in mind when planning makes the process much easier. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare neurotransmitter disease. Its symptoms make it challenging to visit…

How drama therapy helped our daughter conquer haircut anxiety

After years of struggling to get our daughter, Rylae-Ann, to sit for a haircut, we finally had a tear-free experience. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that affects neurotransmitter production, including dopamine and serotonin. This condition leads to severe…

By adapting celebrations, our daughter has meaningful moments

As Christmas approached, Rylae-Ann practiced jingles and dances onstage while decked out in a colorful costume. When showtime came, however, crying and anxiety ensued. After much prodding, Rylae-Ann (center foreground in this manipulated photo) successfully performs her Christmas celebration in front of an audience. (Photo by…