All newborn babies in England are set to be screened for spinal muscular atrophy (SMA) as part of a significant new study. The genetic condition, which leads to muscle weakness, affects a child's ability to walk and can also impair the muscles required for breathing and swallowing. In its most severe form, the disease can be fatal before a child reaches the age of two.
Former Little Mix singer Jesy Nelson, who has been a vocal campaigner for such screening, described the announcement as a "victory for every family" affected by the condition. Nelson’s own twin daughters, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with SMA, and she previously revealed that doctors told her the girls would "probably never walk." The singer has shared her struggles on social media, including the necessity of her twins wearing spinal jackets and foot splints during extreme heat, and she discussed the emotional toll in her upcoming documentary, Jesy Nelson: Life Changing, on Prime Video.
The introduction of screening is considered crucial because pioneering gene therapies exist that can correct the underlying genetic defect, but they must be administered before symptoms emerge to be effective. The testing process will involve a blood sample taken via a heel prick shortly after birth. While Scotland already provides screening for the condition, the rollout in England will begin in most areas by October 2026 as part of a study, with a full expansion scheduled for October 2027. This follows previous controversy over plans that would have limited access to only 72% of the country.
Health Secretary James Murray stated he was "in awe" of the campaigners who pushed for greater awareness, noting that no parent should watch their child lose the ability to move or breathe when earlier intervention could have made a difference. The study, which aims to screen hundreds of thousands of babies, will be led by researchers at the University of Oxford.
The data gathered will assist the UK National Screening Committee in determining whether SMA testing should be adopted as a permanent national fixture. Jesy Nelson was previously 'outraged' after MPs held a debate regarding the muscle condition that affects her twins.
Expressing her pride, Nelson stated that today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I'm incredibly proud to have supported. This is a victory for every family affected by SMA. Whilst it can't change the future of our children, I know it marks the beginning of a brighter future for future SMA families.
