Social media is an extraordinary tool, especially for families affected by rare diseases who are scattered across the globe. Without it, many of us would never have found each other. These online connections have prompted me to reflect on our family’s journey and consider how our experiences might offer valuable…
Our daughter, Rylae-Ann, lost her first tooth not too long ago, and boy was it an event. She’d been wiggling that thing for days, proudly announcing to anyone who would listen that her tooth was loose. While she was initially worried about it, we quickly reassured her that it was…
As the summer days grew shorter and the start of first grade loomed closer, we found ourselves reflecting on the journey that had brought us to this moment. My wife, Judy, and I remembered the days before our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency,…
After an enlightening experience at the mall — where my wife, Judy, and I witnessed the calming influence that dogs had on our 6-year-old daughter, Rylae-Ann — we found ourselves reconsidering the benefits of adding to our family. Judy and I knew we had to explore this option further…
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…
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