My wife, Judy, and I sat on our sofa in a cool, dark room despite it being the middle of the afternoon. We tried to keep our daughter asleep in an effort to avoid the dreaded spell that came every three days. Our phones were nowhere to be seen because…
Our daughter, Rylae-Ann, blinked her eyes a few times before scanning the white room. A warm smile instantly appeared when her hazel eyes fell on my wife, Judy. That’s how she began the first day of her new life. In November 2019, Rylae-Ann underwent experimental gene therapy…
Aromatic l-amino acid decarboxylase (AADC) deficiency is a rare genetic disease with only about 135 cases seen worldwide since it was identified in 1990. So where do we go for help, and how do we care for our daughter? These were questions my wife, Judy,…
Meeting another father whose daughter has a rare disease always prompts a free-flowing and earnest discussion. When it happens, I don’t refrain from opening up. I had an eye-opening experience during a recent meeting with a father with over 25 years of experience in the world of rare diseases. The…
My full and undivided attention was dedicated to navigating the stroller over cobblestone sidewalks. When I reached the end, I executed a 180-degree motion so that the back wheels descended the high curb first since there was no ramp. Potholes, stairs, and crowds were some of the other challenges we…
Warm water flows across our child’s scalp and soothes her. Other times, the water tickles her and makes her feel anxious. Over time, these observations supported us in making her bathing experience pleasant. Children with aromatic l-amino decarboxylase (AADC) deficiency will have severe symptoms such as…
Our daughter throws a toy across the room or whines about not having an iPad before plopping her hands in her food at dinnertime. While these frustrating behaviors are an annoyance, they’re also a luxury we’re fortunate to deal with. During an online discussion with other parents whose children received…
While holding my daughter Rylae-Ann’s hands like a puppeteer, I allowed her fingers to touch the wet snout of a horse. She let out a giggle. That was the moment her love for animals began. After we learned that Rylae-Ann has a rare neurotransmitter disease known as…
The clock struck 3:10 in the afternoon, and the bell let out a final scream. I waved goodbye and gave high-fives to eager students. The middle of June marks the end of my academic year as principal and the start of a long break, for which I’ve dedicated several weeks…
We prepared each meal with diligent slicing, dicing, and pureeing. Each menu and food item was selected thoughtfully for its necessary nutrition. With each spoonful of food, however, anxiety filled our hearts that this one might send our daughter, Rylae-Ann, back to the emergency room. My wife and I did…
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