Hey, it's Manouche, and as I prepared this week's new text-ity episode, all about genetics

and technology, I couldn't stop thinking about my friend, and why being able to name an

illness is so important, Drove syndrome. One of my best friends finally has a name for what

her 9-year-old daughter has, and I couldn't bring myself to ask her to record an interview

with me for the show, because the diagnosis is pretty devastating. It is an autism, or plain old

epilepsy, or metal toxicity, or any of the other things the specialists hypothesized over the years.

Drove syndrome is a rare genetic mutation that causes incessant seizures. Her little girl is never

going to talk, she'll most likely need care for the rest of her life. She acts like a two-year-old

trapped and a 9-year-old's body. And after hundreds of appointments with doctors, hours with

therapists, and harrowing trips to the ER, it was a single visit to a special clinic in Miami

that confirmed the diagnosis two weeks ago. There's no cure, but now my friend knows why

her child is disabled. She can stop feeling guilty about it. There was nothing she could have done.

But sometimes, something can be done about a disease, if the technology gets to you soon enough.

In a minute, we'll visit the newest, most advanced center for gene research. But first,

I'd like to introduce you to someone who works somewhere a little more rural.

My name is Rebecca Schmecker, and I've been working here since 1990.

Rebecca Smoker works at the clinic for special children in Strasbourg, Pennsylvania.

And over the summer, I went to visit because I was intrigued. Intrigued that this clinic with

incredibly high-tech genetic testing technology is in the middle of a cornfield. Okay,

cue the horse and buggy sounds, because yep, it serves the Amish and Menonite communities.

And these communities have some very particular problems. Rebecca herself is Amish,

and she told me about her sister and brother-in-law.

...