Jesy Nelson will be in Parliament on Monday as MPs debate whether to test all newborns for spinal muscular atrophy (SMA), following the devastating late diagnosis of her twin daughters. The former Little Mix singer has partnered with the Mirror to demand universal screening, with a petition signed by 150,000 people.
Late Diagnosis of Twins Spurs Campaign
Nelson's one-year-old twins, Ocean and Story, were diagnosed with SMA at six months, despite multiple GP visits and health visitor check-ups. By then, irreversible nerve damage had occurred, and they will never walk. Nelson has been told that earlier treatment could have been effectively a cure.
The UK National Screening Committee has refused to implement the £5 blood test for SMA since 2018, despite the availability of drugs that can halt the disease if given at birth. An NHS pilot was delayed for years but was brought forward from January 2027 to October 2026 after former Health Secretary Wes Streeting intervened following a meeting with Nelson.
Pilot Excludes Thousands of Newborns
The planned pilot will test approximately 404,000 babies in England but leave 163,000 untested as a control group—a situation experts have called unethical. This means an estimated 11 babies per year will still be diagnosed too late. Streeting had vowed to review this necessity, but his resignation two months ago has left the fate of these babies uncertain.
Giles Lomax, chief executive of SMA UK, whose eight-year-old twins have SMA, said: "Today is a big day for the community as MPs will be debating what the future looks like for those babies born with SMA. With plans already in place for the Inservice evaluation to start in October, whilst we are delighted to have a date, we believe that not screening the full country just isn’t right. No baby should be excluded based on their postcode. We are calling on MPs to represent their constituents and ensure that the expansion to screen all babies is introduced as soon as possible."
Devolved Nations Take Different Paths
Scotland has committed to screening all newborns for SMA, while Wales and Northern Ireland have made no such decision, leaving 47,000 babies untested annually. Three NHS treatments—correcting the faulty gene or providing a replacement protein—are effectively a cure if given at birth before muscle damage occurs.
The Mirror has campaigned on the issue since 2021. On average, 48 babies per year receive a late SMA diagnosis after irreversible disability, with 28 having the most severe Type 1, often requiring breathing machines and feeding tubes.
Petition Demands Fast-Tracked Screening
Nelson's e-petition, debated from 6pm on Monday, states: "We urge the UK Government to fund and help fast-track the process to add SMA to the NHS newborn heel-prick test. SMA is a rare genetic condition with devastating consequences if not treated early. Every baby should be screened at birth to allow early diagnosis and access to life-changing treatment. Without screening, many babies are diagnosed too late. The damage already caused to their mobility, breathing and swallowing cannot be reversed. Scotland has committed to piloting SMA newborn screening this year. All babies should have the same chance. No child should suffer avoidable harm."
