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Neena Nizar’s earliest memory is of her father tying her to an ironing board. His beloved toddler, who seemed fine when she was born, had something very, very wrong with her: Neena’s bones bent and curved and she wasn’t growing normally, so his engineer’s mind desperately seized on the ironing-board solution.

But the problem — which some doctors diagnosed as polio and others as rickets or “we have no idea” — was even worse than bones that wouldn’t stay straight. They also broke down faster than they grew, with weak cartilage where strong bone should be. By the time other little girls were skipping and running and kicking balls, she was in pain and could barely get around. “I had to be carried into school, and I had rods in my hips and metal clamps to hold my bones in place,” said Nizar, who was born in Dubai. “Growing up, that was beyond hard. It was horrible.”

So when Nizar, now 41 and living in Nebraska, hears scientists’ emphatic calls to prohibit “embryo editing” of disease-causing genes, her reaction is shaped by decades of her own suffering — compounded by that of the two sons who inherited her devastating mutation.

continue reading ‘As Calls Mount to Ban Embryo Editing with CRISPR, Families Hit by Inherited Diseases Say, Not So Fast’

Thumb image via STAT – Molly Ferguson for STAT

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