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Exclusive: soprano, who died in 2019, stopped performing after surgery in London in 2015

Like a punch in the stomach, is how Megan Willis felt on hearing that her eight-week-old baby with partner John Hall had a life-limiting muscle-wasting disease. It was devastating — almost too much, too painful to process, says Megan, 29, an events manager, who lives with John, 36, a retail manager, in Colchester, Essex. Little Edward has the genetic condition spinal muscular atrophy (SMA), in which the lack of a protein called SMN, vital for muscle development and movement, results in progre...