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It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all the incentive she needed to begin her day. Every time I redirected her to bed, she pushed the covers…

We already have social security numbers, dates of birth, addresses, license plates, heights, weights, and ICD-10 codes. Isn’t that enough? No. It just plain isn’t enough for people with rare diseases. We need one more number. A unique identifying number that can cut through all the mustard, all the red…

My son Lou’s leg has been broken for 18 months. It must hurt like crazy. If I had a broken leg even for a day, I would surely be crabby, despondent, and mean. But not Lou. Because he has Angelman syndrome, my 21-year-old son cannot speak, but he is often…

Three things keep me up at night: worrying that my daughter’s seizures will return, thunderstorms, and a waning gibbous moon. This past month, we hit the trifecta and experienced all of the above. I saw a seizure a few weeks ago. It…

Since 2020 has gone to hell in a handbasket, it’s necessary to step away from the 24/7 news cycle. I don’t want to focus on the virus. Instead, I declare this the “Year of the Dog.” As they say, “You want a friend in Washington? Get a dog.”…

This is not a story about COVID-19. It is about Angelman syndrome and a daily jazz show, but the coronavirus does make an appearance. If it weren’t for Angelman syndrome, I wouldn’t know anything about jazz. If we didn’t live near Music City, I wouldn’t know professional musicians. If musicians…

We have a problem: My husband, Dave, is a surgeon. Normally, we are proud that his long hours go toward an undeniably good cause: to save the lives of children with heart defects. But now, in the middle of the COVID-19 pandemic, Dave’s career is risky because he is the…

Captain’s Log, Stardate 04.14.2020: This is our 34th day of self-quarantine. To survive, we’ve had to adapt to new restrictions and find distractions to prevent ourselves from losing our marbles. *** Easter was quiet. Instead of having family and friends join us to celebrate,…

I learned to cook by my mother’s knee. We baked cookies and kneaded dough. She even would give me cake batter for my turquoise Easy-Bake Oven. Sometimes, Mom would pull up a chair to the kitchen sink for me to stand on.

Who are we kidding? What are we hiding? OK, sure, it is bad when somebody steals enough personal information to open a fake credit card or empty a bank account. But really, most of us are pretty public about our names and addresses and what we care about on social…