Judy, my wife, and I sat slumped on a bench in a random park that we’d stumbled upon as we walked the cold streets of Taiwan on the night of Christmas Eve 2018. Somehow, we thought a bottle of vodka and juice would help to cool the burning we felt…
Social networks offer a public platform for people to share their ideas, but authenticity can be a challenge to identify amid the abundant content available. As a parent of a child with a rare and incurable disease, I could be misled by the lofty claims and health trends that show…
Even before our daughter, Rylae-Ann, had gene therapy, we knew that she would require immediate and intensive intervention due to her rare disease. There was little guidance on what to do, but my wife, Judy, and I realized we’d have to drastically change our lifestyle as…
The road to potty training our daughter was one of the most difficult journeys my wife, Judy, and I set out on. More significant challenges took precedence before this, but potty training was an inevitable milestone we knew we would eventually have to tackle. When our daughter, Rylae-Ann, was born,…
Rebirth is a common theme that appears in such classic stories as “Sleeping Beauty,” “Beauty and the Beast,” “A Christmas Carol,” and “The Lion King.” The idea holds a special place in the psyche of humans and, especially, in our rare disease community. In 2018, Rylae-Ann was first admitted…
When my wife, Judy, and I discovered that our daughter, Rylae-Ann, has a rare, neurotransmitter disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, we automatically became part of a very small group of parents from around the world. The life-threatening symptoms of AADC…
My wife, Judy, and I recently attended our third awareness day event for aromatic l-amino acid decarboxylase (AADC) deficiency. This year’s annual event, on Oct. 23, was a live video event on Facebook that showcased even more families, including our daughter, Rylae-Ann, who has…
When our daughter, Rylae-Ann, was 3 months old, we began to see signs that something wasn’t right. When that happened, my wife, Judy, and I disappeared from social media. We retreated from our circle of friends into the darkness of our living room. Thankfully, our friends didn’t give up…
The occasional foot or backhand to the face has been worth the benefits of co-sleeping as a family. My wife, Judy, and I were forced to sleep with our daughter, Rylae-Ann, because of the debilitating symptoms of aromatic l-amino acid decarboxylase (AADC) deficiency. Co-sleeping is when…
My wife, Judy, and I have given several workshops for parents based on our experience caring for our daughter, Rylae-Ann, who has a rare disease called aromatic l-amino acid decarboxylase (AADC) deficiency. During the question-and-answer session at the end of each discussion, among the most common questions is how…
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