Jesy Nelson has emotionally revealed she will be at Parliament on Monday as MPs prepare to debate newborn screening for spinal muscular atrophy (SMA), insisting the current NHS plans create an unfair “postcode lottery” that could leave some babies without access to potentially life-changing treatment.
The singer, 35, has become one of the leading voices campaigning for universal screening after her twin daughters, Ocean and Story, were diagnosed with SMA Type 1. The devastating condition, which causes progressive muscle weakness, was diagnosed too late for the girls to benefit from treatment immediately after birth.
Because of the delayed diagnosis, the one-year-old twins are unlikely to ever walk and now rely on specialist breathing equipment at night and feeding tubes.
Following months of campaigning, Jesy helped secure more than 150,000 signatures on a petition calling for SMA to be included in routine newborn screening. The issue is now set to be debated by MPs on June 22.
Ahead of the landmark debate, the former Little Mix star shared an emotional message with fans on Instagram, celebrating progress while warning that the planned rollout will initially cover only 72 per cent of England.
She wrote: “We have had some amazing news that screening is due to start in October this year, which is a huge step forward. But there’s still a big problem… it will only cover 72% of England.”
Calling the system unfair, she added: “That means some babies won’t be screened simply because of where they live. A postcode lottery like that just isn’t fair. Every baby deserves the same chance. Every baby’s life matters.”
Jesy revealed she would attend the debate alongside SMA UK chief executive Giles Lomax and urged supporters to contact their MPs and push for universal screening.
In an emotional video, she reflected on how far the campaign has come.
“Because of you guys the signatures got over 150,000. And because of that it is going to be debated in Parliament this Monday, which is just crazy because we did that,” she said.
“This has never got this far before. It’s been ignored for so long but you guys made enough noise and you supported it.”
The singer stressed that early intervention could dramatically change children’s lives.
“If they get the treatment from after birth, the treatment is so life-changing, you wouldn’t even know they had SMA. But if they don’t, they will go on to be disabled.”
Fighting back tears, Jesy questioned why some newborns would benefit while others could miss out depending on where they live.
“Why are we playing postcode lottery with children’s lives? This is about our children’s futures. We are playing with children’s lives and it is not okay.”
She then heartbreakingly admitted: “It makes me feel so sad that my children’s lives could have looked so different…”
Last month, Health Secretary Wes Streeting confirmed that around 400,000 babies in England will begin receiving SMA screening from October 2026 through the NHS “heel prick” test programme.
The current test, carried out when babies are around five days old, screens for 10 treatable conditions, including cystic fibrosis.
Jesy has previously spoken openly about the emotional toll of caring for Ocean and Story, describing some days as “really fing s” as the girls undergo demanding daily medical procedures.
Speaking on Jamie Laing’s Great Company podcast, she explained the harsh reality of the condition.
“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. And they will die before the age of two.”
Despite the challenges, the singer remains determined and hopeful.
“My girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.”
