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 Heartbreaking Diagnosis
The former Little Mix singer, from Romford in East London, has revealed the devastating journey of her twin daughters, Ocean and Story. The babies, born prematurely at 31 weeks in May 2025, gradually lost the use of their legs in their first few weeks of life.
It was only after a delayed diagnosis that Jesy and her fiancé, musician Zion Foster, 27, learned their girls have type 1 spinal muscular atrophy (SMA), a rare and severe muscle-wasting disease. Doctors have told the parents the eight-month-old twins may never walk.
Jesy expressed her anguish, stating: "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. 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 Campaign for a Routine £5 Test
The Mirror is campaigning for the NHS to introduce a routine heel-prick test for SMA, dubbed the 'Jesy test', which costs just £5. This simple screening could allow for immediate intervention.
Unlike most other developed nations, Britain does not currently include SMA in its standard newborn screening programme. Gene therapy exists that could halt the condition's progression, but its success depends on an early diagnosis, often before symptoms even appear.
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."
Government Action and Future Screening
Mr Streeting confirmed that the campaign has directly influenced government policy. The UK National Screening Committee has recommended a large-scale study into newborn screening for SMA, and a call for research is now live.
As part of an NHS trial, hundreds of thousands of babies will be screened for the disease. The Health Secretary added: "She has challenged us to go further on screening, and she’s absolutely right to do so. We’re determined to do more for people affected by this disease."
He also noted that there are now more treatments available for spinal muscular atrophy than ever before, offering hope that children with SMA can not just survive, but thrive.
Jesy Nelson, who rose to fame winning the X Factor with Little Mix in 2011, has said she will continue to use her voice to push for change, ensuring other families do not face the same painful diagnostic delays.
