(Science) – Give future parents in our shoes a choice, before it’s too late. That’s what several parents of babies born with a fatal genetic brain disorder called Krabbe disease told a federal advisory panel on newborn screening this week. One mother from Virginia, Kelly Danoy, said her 2-year-old daughter Sofia “suffers needlessly because she was born in the wrong state.”

Sofia wasn’t diagnosed with the rare disease until she was 6 months old, in contrast to Christin Webb’s son Owen, who was tested prenatally for Krabbe because his sister Mabry Kate had it. Webb told the same panel her son had been given a stem cell transplant soon after his birth—and Mabry Kate’s death—and that it had radically improved the now-8-year-old’s life. (Read More)