Glow sticks danced in the air as I snapped pictures of us in our striped socks. The fun day was my family’s first event dedicated to rare disease awareness, but while it made for great photos, it wasn’t a day of action for us. We were still newbies at that…
Chinese New Year celebrations are a two-week extravaganza filled with food and excitement that can overwhelm the senses. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare disease required my wife, Judy, and I to work as a team to keep our…
One minute, it was a slow coo, and the next, a high-pitched scream. It may have sounded obnoxious to a random observer, but for us, it was speech. It was a long way from where a typical 3-year-old should be, but it was an exciting milestone for us. Our daughter,…
I placed travel neck pillows around my daughter, Rylae-Ann, to make sure she was snug in the swing. I slowly began to push her. Immediately, she started snorting and giggling. Rylae-Ann didn’t have much of a choice about going on the swing at the time. There was little she…
As my daughter’s shaky hand brought the food to her mouth, sauce and pieces of food stuck to her long, curly hair. Despite her fixating on the fork and sticking out her tongue for extra support, Rylae-Ann’s aromatic l-amino acid decarboxylase (AADC) deficiency symptoms were making…
As I carried my daughter, Rylae-Ann, to bed one night over Christmas vacation, I noticed my arms shake beneath her. There’s no denying it, the days of her being a baby, a toddler, and even a preschooler are over. I stayed that night for a few…
Life as a rare disease family can feel isolating at times. Not many people can relate to our challenges or accommodate our unusual needs. However, isolation can limit powerful opportunities for a child’s learning and development. My wife, Judy, and I were an outgoing and adventurous couple who enjoyed…
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…
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