Jesy Nelson calls plan to test newborns for deadly muscle condition a 'victory'
BBC News 2026-07-16 00:20:52
Context: All newborn babies in England will be tested for spinal muscular atrophy (SMA), a genetic disease causing muscle weakness, as part of a major study starting from October 2026. Former Little Mix singer Jesy Nelson, whose twin daughters were diagnosed with SMA, has been campaigning for screening and described the announcement as a "victory for every family" affected by SMA. The test uses a sample of blood taken in a heel prick shortly after birth.
Key Facts
- The study, led by scientists at the University of Oxford, aims to screen hundreds of thousands of babies for SMA, helping the UK National Screening Committee make a final decision on whether SMA testing should become a permanent fixture.
- SMA causes muscle weakness affecting movement, breathing, and swallowing, and in severe cases, it is fatal before the age of two, but pioneering gene therapies can correct the genetic defect if given before symptoms emerge.
- Jesy Nelson's twin daughters, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with SMA, and she was told they may "never walk", with Nelson recently sharing on social media about their need for spinal jackets and foot splints.
- The screening will be rolled out in most of England from October 2026 and fully expanded by October 2027, with Scotland already having SMA screening for newborns.
- Health Secretary James Murray stated he was "in awe" of campaigners who raised awareness of SMA, saying "no parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference".