I have become quite good at managing calendars. Between being a school principal, running a nonprofit, writing articles, and being a husband and father, my calendar looks like a complicated game of Tetris. Somehow, I keep finding ways to squeeze another block into an already crowded space.
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As parents, we celebrate the adorable little sounds our babies make. The giggles, squeals, and funny noises become part of their personalities. Our daughter, Rylae-Ann, had one particularly memorable sound. When she laughed, she would make a little snorting noise. It was absolutely adorable. We thought we had a tiny…
As educators, my wife, Judy, and I have always believed books can change lives. They can transport children to new worlds, introduce unfamiliar ideas, and inspire them to dream about what they might become. Sometimes, they can even help change the world. That was…
Just when we thought life was returning to normal, Bangkok decided we needed a swimming pool outside our front door. Our daughter, Rylae-Ann, had just returned to school after recovering from a lung infection and severe bronchitis. After several days at home, she was finally feeling better…
One of the less glamorous benefits of returning to school is apparently getting access to every germ circulating among children. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that affects the brain’s ability to produce important neurotransmitters such as…
Nearly seven years ago, my wife, Judy, and I handed our daughter over to a surgical team in Taiwan for an experimental gene therapy. It was November 2019. Rylae-Ann was 18 months old and living with aromatic l-amino acid decarboxylase, or AADC, deficiency. We had spent months…
Editor’s note: This column includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention…
Our daughter, Rylae-Ann, looks wonderful in her new school uniform. I realize I may be slightly biased, but she wears it with the confidence of someone ready to take on the world, or at least Grade 2. Getting into that uniform, however, sometimes feels like completing an…
My wife, Judy, and I have learned that raising our daughter, Rylae-Ann, rarely involves following a straight path. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare neurotransmitter disorder that once prevented her from holding up her head, sitting independently, or speaking. After receiving…
In November 2019, my wife, Judy, carried our 18-month-old daughter into National Taiwan University Hospital for an experimental gene therapy. Rylae-Ann couldn’t hold up her head, sit independently, speak, or control her movements. She experienced dystonia and oculogyric crises in which her eyes rolled upward and became…
Recent Posts
- Taking time for the unscheduled work of rare disease parenting
- When a cute snort becomes a warning sign for a child with AADC deficiency
- Man’s case shows mild symptoms may sometimes mark AADC deficiency
- Stories about rare disease that educate and inspire deserve to be told
- This rare disease family showcased its adaptability as floodwaters rose