+ ALTERED STATE: Gene editing could be used to modify human embryos and delete genetic defects before birth.
LAYLA RICHARDS WAS A bouncy 7-pound, 10- ounce baby with downy dark hair and plump cheeks when she was born in a London hospital in June 2014. But 12 weeks later, Layla, who had been settling in at home in North London, suddenly stopped drinking milk and began to cry constantly. Because she had been a sunny, happy infant until then, her parents took her to see the doctor. He suspected a stomach bug, but just to be sure he took a blood test. The results that came a few days later were a shock: Layla had an acute, deadly form of leukemia that she couldn’t survive without immediate treatment. She was just 14 weeks old.
When the diagnosis came in, an ambulance rushed the family from their home to intensive care at the Great Ormond Street Hospital (GOS), the world-famous pediatric center in Bloomsbury. Her doctors described her cancer as “one of the most aggressive forms of the disease” they had ever seen. For the next few weeks, she endured several rounds of chemotherapy, followed by a full bone marrow transplant to replace her damaged blood cells. This sort of aggressive therapy can often be successful in babies, but none of Layla’s treatments, even the experimental ones, worked. Medically, she was out of options. Only one choice remained— admitting her to an end-of-life care facility to make her final weeks more comfortable.