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…
A few weeks ago, our daughter, Rylae-Ann, mentioned she had a wiggly tooth. I gently pushed her teeth and found the wiggly one. The moment of losing her first tooth was near, and my wife, Judy, and I decided to use it as a learning moment. When Rylae-Ann was born,…
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…
Many parents may dread the summer break from school, but for my wife, Judy, and me, it’s a time to create memorable moments. With our daughter, Rylae-Ann, the greatest of these is when we’re at the beach. Growing up on an island in the Pacific, I’ve always connected with…
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…
My daughter, Rylae-Ann, followed me and my wife, Judy, into the mall for routine shopping. We were greeted with whimpers and yelps from various furry friends as soon as we entered. Rylae-Ann needed no encouragement. She went straight to the pen of puppies and grabbed one to…
With popcorn and drinks in hand, I walked with my 5-year-old daughter, Rylae-Ann, into the dimly lit cinema. Because of her limitations, I feared the worst but hoped for the best. My wife, Judy, was the one who began to voice concern about our daughter when she was born. We…
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…
My daughter, Rylae-Ann, was born with a rare and debilitating genetic disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, which meant countless trips to the emergency room and a battery of tests. Each time we’d enter the hospital, the only thought that crossed my mind was…
A supportive and loving community has sprung up around my daughter, Rylae-Ann. She says hello to everyone she meets on her way to school and makes it home without incident, all the while grinning and preparing to tell her tale when I return home from work. What else could…
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