Calls for SMA screening ignored before Jesy Nelson campaign, say families

Portia Thorman, whose nine-year-old son, Ezra, has SMA1, ending up in intensive care as a newborn before he was diagnosed. Photograph: David Levene/The Guardian

When former Little Mix star Jesy Nelson announced her twins had been diagnosed with spinal muscular atrophy type 1 (SMA1), a rare genetic condition that causes muscle wastage, the news quickly made front page news.

The call for SMA to be added to newborn screening sprang to national attention and the health secretary, Wes Streeting, was quick to respond, saying Nelson was “right to challenge and criticise how long it takes to get a diagnosis”.