Jesy Nelson calls plan to test newborns for deadly muscle condition a 'victory'

Image source, PA Image caption, Former Little Mix singer Jesy Nelson was told her twin daughters may "never walk" Published 3 minutes ago All newborn babies in England will be tested for the genetic disease spinal muscular atrophy (SMA), as part of a major study. Former Little Mix singer Jesy Nelson has been campaigning for screening since her twin girls were diagnosed with the condition. Nelson described the announcement as a "victory for every family" affected by SMA. Early treatment for SMA can transform babies' lives. SMA causes muscle weakness. This affects movement such as the ability to walk, but it also affects the muscles needed to breathe and to swallow. In the most severe cases it is fatal before the age of two. However, there are pioneering gene therapies that can correct the genetic defect that causes SMA. They need to be given before symptoms emerge as they cannot undo any damage that has already been done – hence the call for testing newborns. Jesy Nelson told her twin babies may 'never walk' Published 4 January Earlier this year, Nelson revealed she had been told her daughters Ocean Jade and Story Monroe Nelson-Foster would "probably never walk". The singer recently posted on social media about how her twins needed to wear spinal jackets and foot splints in the middle of a heatwave. And in a trailer for her forthcoming documentary Jesy Nelson: Life Changing on Prime Video, she said: "I feel like I'm going to feel heartbroken for the rest of my life." This Instagram post cannot be displayed in your browser. Please enable Javascript or try a different browser. View original content on Instagram The BBC is not responsible for the content of external sites. Skip instagram post Allow Instagram content? This article contains content provided by Instagram. We ask for your permission before anything is loaded, as they may be using cookies and other technologies. You may want to read Meta’s Instagram cookie policy , external and privacy policy , external before accepting. To view this content choose ‘accept and continue’ . Accept and continue The BBC is not responsible for the content of external sites. End of instagram post There is already screening for SMA in babies in Scotland. Screening will become available in most of England from October 2026, as part of a study, with a full expansion by October 2027. Earlier plans - which would have seen screening available to only 72% of England - caused controversy. Jesy Nelson 'outraged' after MPs debate muscle condition that affects her twins Published 24 June The test uses a sample of blood taken in a heel prick shortly after birth. Nelson said: "After years of campaigning, it means so much. "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