Former Little Mix singer Jesy Nelson has launched a heartfelt campaign urging the NHS to introduce immediate screening for a rare genetic disease in newborns, following the devastating diagnosis of her infant twin daughters.
A Mother's Mission for Change
Nelson, 34, revealed on ITV's This Morning that she feels a profound 'duty of care' to raise awareness of spinal muscular atrophy (SMA). This comes just days after she announced that her twins, Ocean Jade and Story Monroe, born in May 2025 to her and fiancé Zion Foster, have SMA Type 1. This is the most severe form of the degenerative muscle-wasting disease, meaning the children are unlikely ever to walk.
The situation is particularly heartbreaking because, had the condition been identified at birth, a groundbreaking gene replacement therapy could have reversed it. 'If this is caught from birth, it's just life-changing,' Nelson stated. She explained that while her daughters have now received the one-off infusion treatment, it was too late to restore lost muscle function, only halting further progression.
The UK's Screening Lag Behind the World
Nelson is specifically campaigning for SMA to be added to the NHS newborn blood spot screening, commonly known as the heel prick test. Currently offered to every baby at five days old, this test checks for nine rare but serious health conditions. SMA, which affects around 70 children born in the UK each year, is not one of them.
This places the UK as a global outlier. Newborn SMA screening is already routine in numerous countries, including:
- The United States (in all states except Nevada and Hawaii)
- France, Germany, Switzerland, Portugal, and Denmark
- Belgium, Norway, and the Czech Republic
- Russia, Turkey, Qatar, Taiwan, and Ukraine
Scotland has announced it will begin screening from spring 2025, but no such plans are confirmed for England, Wales, or Northern Ireland. Other nations like Australia, Canada, and Japan are running regional pilots.
Why Timing is Everything in Treating SMA
Professor Giovanni Baranello, a leading paediatric neuromuscular disorders consultant at Great Ormond Street Hospital where Nelson's twins were diagnosed, emphasised that timing is critical. He explained that SMA Type 1 has an early onset, usually within the first few months. Without treatment, children never achieve major milestones like sitting or walking and historically passed away before age two.
'If they are treated immediately, in a few days, even sometimes one or two days after birth, they can be "normal",' Professor Baranello told the Daily Mail. The cutting-edge gene therapy delivers a functional copy of the missing SMN1 gene. However, without newborn screening, diagnosis typically only occurs once symptoms appear, by which time muscle damage is irreversible.
The UK National Screening Committee (NSC) initially recommended against screening in 2018, citing a lack of evidence. After a reassessment in 2023, they announced plans for a pilot research study to evaluate adding SMA to the heel prick test. The human and financial costs of delay are significant. Research from Novartis estimates that between 2018 and 2033, the cost to the NHS of not screening will exceed £90 million, condemning around 480 children to a life of severe disability.
Health Secretary Wes Streeting has backed Nelson's campaign, telling ITV News she was 'right to challenge and criticise how long it takes to get a diagnosis.' Nelson's powerful advocacy now spotlights a critical gap in the UK's healthcare provision, hoping to spare other families the same painful journey.
