Former Little Mix star Jesy Nelson has spoken out in fury and heartbreak after a parliamentary debate failed to secure universal newborn screening for the rare muscle-wasting condition affecting her twin daughters.

The singer, 35, was visibly emotional as she left Westminster, describing herself as "absolutely fuming" and "so let down" by the outcome of the debate on spinal muscular atrophy (SMA) screening .

While the government announced that screening would be introduced from October 2026, three months earlier than initially planned, the rollout will only cover 72% of newborns in England .

The remaining 28% of babies will not have access to the potentially life-changing heel-prick test, a decision Nelson condemned as an "unethical" postcode lottery .

"How does that make sense? How is that fair?" an emotional Nelson asked following the debate .

She added: "You are basically telling me that if you live in a certain postcode, you're not as important as the other 72% of England" .

The debate was prompted by a petition launched by Nelson, which garnered more than 150,000 signatures .

Nelson revealed in January that her one-year-old twins, Ocean Jade and Story Monroe, had been diagnosed with SMA Type 1, a severe genetic condition that causes progressive muscle weakness .

Due to the late diagnosis, the girls are unlikely to ever be able to walk, require breathing equipment at night, and rely on feeding tubes .

The singer shared the daily reality of caring for her daughters, saying: "I have to give them medicine every four hours. I have to turn them every two hours, because they can't do that themselves" .

She explained that she must watch them closely to prevent choking, as the disease has affected their swallowing muscles .

Currently, treatment for SMA is most effective when administered at birth, before irreversible nerve damage occurs .

If left untreated, babies with the most severe form of the condition often do not survive past two years of age .

Minister Defends Staggered Approach

Public Health Minister Sharon Hodgson defended the limited rollout during the debate, citing that only seven of the 13 NHS testing laboratories in England currently have the necessary equipment .

Hodgson stated that the government is considering options to extend the programme further across the country .

A Department of Health and Social Care spokesperson said: "Jesy and other campaigners have made a very powerful case on screening for spinal muscular atrophy, and we have heard that case" .

The spokesperson added that the evaluation aims to build the evidence base needed to support a full national screening programme .

However, the decision was met with frustration from several MPs, including Amanda Martin, who questioned why babies born in her Portsmouth constituency "matter less than babies born in other parts of the country" .

Ruth Jones MP also pointed out that Ukraine had managed to begin newborn screening for SMA "during a war," questioning why the UK was falling behind .

A Devastating Personal Fight

Nelson has become a patron of the charity SMA UK and has campaigned tirelessly since her daughters' diagnosis .

She met with the former health secretary Wes Streeting in January to discuss the life-changing impact early detection could have had on her twins .

In April, she visited 10 Downing Street to continue her advocacy .

Reflecting on the parliamentary debate, Nelson said she showed Hodgson a video of two sisters with SMA who received different treatments.

One sister was in a wheelchair, while the other was able to run alongside her .

Nelson claimed the minister admitted she had not realised the full extent of early treatment's impact .

"How do we have a health minister standing up in Parliament arguing why this should not be rolled out across the whole of England, when she doesn't even know how life-changing this treatment is?" Nelson asked .

"I cannot tell you how heartbreaking it is to know that my children's lives could have looked completely different. They could have been walking by now" .

Nelson has called on Hodgson and Health Secretary James Murray to provide a clear timeline for when 100% coverage across England will be achieved .

The singer added: "When are we going to get answers, and when is this going to change, because this cannot go on" .

Scotland introduced universal SMA screening in March, while Wales and Northern Ireland have yet to announce similar programmes .

Charity Muscular Dystrophy UK welcomed the debate but said it would continue to push for full rollout across every part of the UK, stating: "No more postcode lottery" .