Jesy Nelson's Bittersweet SMA Screening Update Reveals Postcode Lottery
Singer Jesy Nelson has shared a bittersweet update regarding spinal muscular atrophy (SMA) screening, revealing that whether a baby gets tested depends on a 'postcode lottery' in England. The 34-year-old artist, whose nine-month-old twins Ocean and Story were diagnosed with SMA Type 1 in January, expressed both hope and frustration about the new screening plans.
Mixed Emotions Over Screening Announcement
While celebrating what she called a 'major milestone' in her campaign for universal SMA screening, Nelson explained the limitations of the current plan. 'They have now decided to roll that out in October for all babies in England to be tested at birth for SMA, which is absolutely incredible,' she said. 'But at the same time it's bittersweet because basically they are only doing it in certain areas of England.'
The singer emphasized the inequality this creates: 'If you do not live in that certain postcode or part of England then your baby won't be tested for SMA, which is really sad. It's essentially a postcode lottery for your baby which shouldn't be the case. All babies lives matter, so as amazing as it is there is still a long way to go.'
Background of Nelson's Campaign
Nelson began campaigning for expanded newborn screening after her own devastating experience. Her twins were diagnosed with SMA Type 1, a rare muscle-wasting condition that means they are likely to never walk and require specialist breathing equipment and feeding tubes. The late diagnosis occurred because SMA testing wasn't part of England's standard newborn screening program.
The NHS currently performs 'heel prick' tests on babies at around five days old to check for just 10 treatable conditions, including cystic fibrosis. SMA was not included until recent developments.
Government Announcement and Limitations
Despite the UK's National Screening Committee rejecting calls to introduce checks for another muscular disease in January, Health Secretary Wes Streeting announced plans this week for more than 400,000 babies to be screened for SMA from October 2026. In a letter to Nelson and SMA UK chief executive Giles Lomax, Streeting confirmed the screening 'will now start in October this year rather than January 2025 as previously planned.'
However, the pilot program will only cover certain geographical areas, creating the postcode lottery Nelson described. The singer vowed to continue her advocacy: 'I'm going to keep pushing and trying as much as possible to get this so it is in all areas of England.'
Community Impact and Parliamentary Debate
Nelson also shared positive news about her petition reaching 100,000 signatures, which means it will now be debated in Parliament. 'That is all down to you guys so thank you so so much,' she told supporters. 'You're incredible and I am so appreciated of all the support and love.'
The singer described this development as 'a really big moment for the SMA community because this has been going on for years trying to get this passed.'
Personal Journey and Medical Reality
Despite the devastating prognosis that her daughters may not live beyond age two without treatment, Nelson remains hopeful. 'My girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds,' she said on Jamie Laing's Great Company podcast.
She explained the medical reality: 'Spinal muscular atrophy is a muscular wasting disease, so they don't have a gene that we all have in our body. Their muscles are now deteriorating and wasting away, and if you don't get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything.'
Nelson has continued filming her Prime Video series despite the challenges, explaining: 'When the girls got their diagnosis, we decided that we wanted to continue filming. As hard as it was, we were like, "You know what? There's a reason you guys are here, and we've got to make the best out of this situation."'
The daily care for her twins remains emotionally taxing. 'Every day is so full-on - I can speak about it, but I'll never be able to explain how intense it is until you see it,' she previously told the Daily Mail. Some days are 'really f***ing s***' while others are slightly lighter, creating what she describes as an emotional rollercoaster.
