My Baby Wasn’t Born Healthy and Her Life Still Matters

There’s a popular saying these days when you’re expecting—“I don’t care if it’s a boy or a girl as long as the baby’s born healthy.”

But ours wasn’t.

We had no inkling, though, until nearly two months after our daughter was born that anything was “wrong.” When the diagnosis came more than a year later, it was the most unbelievable of circumstances—my husband and I were both carriers for a genetic mutation that is found in only 1 in every 100,000 people. We had no idea that every child born to us would have a 1 in 4 chance of having Aicardi-Goutieres Syndrome, a condition so rare that there are only 400 known cases worldwide. You could say we hit the jackpot the very first time out.

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