Cystic Fibrosis: The Disease That Came to Stay

October 6, 2014 4:32 PM

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Cystic Fibrosis: The Disease That Came to Stay

Cystic fibrosis came to stay on Good Friday 1986 at 5 p.m. when my giggly toddler was 22 months old. It began to take her breath away before we even knew what it was. "Cystic fibrosis?" I said to the voice on the phone. "What is that?" The voice that I'll never forget responded coldly, "She'll be dead before she's 5. Call a specialist." And the line went dead. And our world crumbled.

How does one climb out of the darkness when such a future is staring at you and try and stop what you've been told is the inevitable death of a loving, lively, twinkling, sweeter than sweet child? You just do it. You cry every tear that has ever been until your face and clothes are drenched in the l...

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