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…
Before our daughter, Rylae-Ann, was born, I read books and logged many internet hours learning about parenting. I wanted to be prepared. However, issues like common viral infections were deleted from my mind once I knew she had a rare disease. My wife, Judy, and I didn’t know much about…
After the dough came out hot from the oven, I added drops of dye into three balls of it. I worked the different colors into the dough to create a favorite and timeless childhood toy that’s been proven valuable for learning, creativity, and sensory integration. Modeling clay, putty, or colorful…
A notification pops up on my phone. It’s from Facebook, sharing a memory from five years ago. The clip shows me holding my daughter, Rylae-Ann, who’s playing with a ball. However, I acted as a puppeteer because she couldn’t move her limbs, and there was no indication she’d ever be…
In June, I celebrated my 40th birthday. The day went as planned. Family showered me with attention, friends rubbed in the major milestone, and Facebook well wishes came pouring in. Entering the second half of life, I realized that, in my youth, my mentors set me up for challenges I’d…
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