Health Secretary Wes Streeting has personally thanked pop star Jesy Nelson and the Daily Mirror for their powerful campaign demanding a simple, life-changing test for all newborn babies in the UK.
A Mother's Agonising Journey to Diagnosis
The campaign follows the heart-breaking experience of former Little Mix singer Jesy Nelson, whose twin daughters, Ocean and Story, were diagnosed with type 1 spinal muscular atrophy (SMA) after a critical delay. The girls, born prematurely at 31 weeks in May 2025, gradually lost the use of their legs in their first few weeks of life. Jesy and her fiancé, musician Zion Foster, 27, were later told their daughters may never walk.
Jesy, from Romford in East London, described the anguish of knowing a treatment was available but could not be administered in time. "If these were the cards I was going to be dealt and there was nothing I could do, then it’s almost easier to accept," she said. "But when you know there is something that could be done and it is life-changing for your child, that’s the part I cannot accept."
The £5 Test That Could Change Lives
The Mirror is calling for the immediate introduction of a routine 'heel prick' test for SMA, costing just £5 per child. This quick and cheap screening, already standard in most other developed nations, could have allowed for immediate intervention for Jesy's twins. Gene therapy exists that can halt the progression of the devastating muscle-wasting disease, but only if administered swiftly after birth.
In a heartfelt message, Health Secretary Wes Streeting said: "I want to thank Jesy and the Mirror for shining a light on this horrendous condition and what can be done to pick it up. Jesy’s courage in speaking out about an unimaginably frightening situation is truly admirable." He confirmed that her advocacy has directly influenced government policy.
Government Action and National Screening
Mr Streeting announced that the UK National Screening Committee has recommended a large-scale study into newborn screening for SMA, with a call for research now live. As part of an NHS trial, hundreds of thousands of babies will now be screened for the condition.
"She has challenged us to go further on screening, and she’s absolutely right to do so," Streeting added. "We’re determined to do more for people affected by this disease. There are now more treatments available for spinal muscular atrophy than ever before, and we are seeing children with SMA now not just living and surviving but thriving."
The eight-month-old twins are now described by their mother as smiling and 'still happy'. Jesy has vowed to give them all her positive energy, stating she will try her best to be there for them every step of the way.
