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When my son was diagnosed with Angelman syndrome 20 years ago, I believed that we would find a cure. Lou had severe developmental delays and epilepsy. In 2000, the genetic cause of those symptoms was considered an address, not a route to treatment. Few people realized that his diagnosis…

Everybody wants my son’s cerebrospinal fluid. My 20-year-old son, Lou, has Angelman syndrome from a deletion of genes on his maternal 15th chromosome. The lack of those genes makes it hard for Lou’s brain to understand abstract concepts, such as waiting in line to buy ice cream that he…

For many kids, September typically means it’s time to go back to school. But for my daughter, Jessie, it was a continuation. Jessie was fortunate to have a year-round program, or at least I felt that way at the time. Due to her significant delays, the…

If my daughter, Jessie, doesn’t like what she hears, she will walk away. When her boyfriend — more of a buddy than a romantic interest — gets frustrated, he raises his voice and curses like a sailor. Jessie is unimpressed by his outbursts and avoids him…

I was on sabbatical this summer and didn’t write for BioNews Services or my blog. Sometimes you don’t realize how burned out you are until you stop. But the longer I went without writing, the more anxious I became. When people asked if we…

Welcome to Terry Jo Bichell’s “A Rare Mind,” a new Angelman Syndrome News column. About 75 people, mostly women, were in the room at the Washington Marriott Georgetown, listening attentively to lectures presented by Global Genes about a really technical subject. The attendees were teachers, waitresses, housewives, and marketing executives…

This past weekend was action-packed from front to back. There was Jessie’s last dance of the season, a wedding to which the whole family was invited (doesn’t always happen), and another wedding that Jessie was expected to attend (we were the transportation). Actually, we are friends of the…

Last week, on a clear, sunny day, we decided to go on a hike. My daughter Jessie complained every step of the way, and I loved every minute of it. Not really, but I’ve learned to accept her lack of enthusiasm over the years. It seems whenever I…

Jessie took the Goober Grape out of the cabinet and handed it to me. I said, “Oh, you are hungry, I need to find some bread,” and proceeded to look for a loaf. Then I had to tell her we were out and that we would…

Well, well, well, if Jess isn’t turning into a regular 007. Typically, when caught, she’s a deer in headlights, but not this time. While we were getting dressed for a Sweet 16 party, Jess was helping herself to treats tucked away…