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 progressively weaker muscles. Until three years ago there was no treatment and babies affected by Type 1 — the most severe form — gradually lost the use of their muscles before dying, usually before age two as a result of breathing problems caused by weak chest muscles.