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My daughter Moy Moy used to talk. A degenerative disorder snatched the child she once was away from us when she was only eight (or nine, or maybe seven — who knows? It all happened so gradually it is impossible to pin it down).

The disorder was never diagnosed. We tested her for everything that was treatable and were then left with only a bunch of extremely rare disorders.

The doctor told us we could keep testing but all we would get would be a name — there would be no treatment. So we stopped, partly because the tests were very expensive, and partly because still being in testing mode made it harder for us to accept our new reality.

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