Former Little Mix singer Jesy Nelson has taken her fight for newborn health screening directly to the heart of government, meeting Health Secretary Wes Streeting in Parliament to demand urgent action.
A Mother's Mission for Change
Nelson, whose twin babies Ocean Jade and Story Monroe were diagnosed with the muscle-wasting disease spinal muscular atrophy (SMA), held a private meeting with Mr Streeting in his parliamentary office on Monday. She was joined by representatives from the charity SMA UK to stress the devastating consequences of a late diagnosis.
The Mirror is campaigning for a simple, £5 check for SMA to be added to the NHS newborn heel prick test. This would allow babies to be treated before irreversible nerve damage occurs in the first critical weeks of life. The meeting was partially filmed and is scheduled to be aired on ITV's This Morning on Tuesday.
Speaking after Nelson publicly revealed her twins' condition earlier this month, Mr Streeting said: "My heart goes out to Jesy Nelson and I think the way she has spoken about what must be an unimaginably frightening situation has been commendable. She’s challenged us to go further on screening, and she is right to do so."
The High Cost of Screening Delays
Spinal muscular atrophy is a genetic condition that causes progressive muscle weakness and paralysis. Pharmaceutical firm Novartis estimates that 33 UK babies every year are left in a wheelchair because they are diagnosed too late for effective intervention.
A groundbreaking one-off gene therapy called Zolgensma, available on the NHS since 2021, can effectively cure SMA if administered early. The treatment works by replacing the function of the missing or faulty SMN1 gene. However, its success depends on swift action before muscle neurons die off.
Rob Hastings, chief medical officer at Novartis UK, stated: "We strongly urge the Government to expand newborn screening for SMA across the UK, to bring us in line with the majority of countries in Europe where SMA is routinely screened for at birth."
A Race Against Time for Treatment
In an emotional interview on ITV's This Morning, first-time mother Jesy Nelson explained the rapid progression of the disease and her anguish over the missed opportunity for early treatment. "Every day I would start to see it gradually less and less. And it makes me so sad when I watch back the videos now," she said, describing how her babies' leg movements diminished over weeks before stopping entirely.
She emphasised the critical treatment window: "That’s how quick it is - and that’s why it is so vital to get treatment from birth… it stops any of the muscles that are still working from dying but any that have gone, you can’t regain them back."
Children with the more severe Type 1 SMA who are diagnosed late typically require a wheelchair, permanent breathing support, feeding tubes, and overnight nursing care. The meeting with the Health Secretary underscores a growing public and clinical consensus that the UK must catch up with other developed nations on this life-changing screening.
