Former Little Mix singer Jesy Nelson has issued a powerful and emotional challenge to Health Secretary Wes Streeting, demanding to know why it took a celebrity's personal tragedy to spotlight the urgent need for newborn screening of a devastating muscle-wasting disease.
A Mother's Heartbreaking Question
In a meeting filmed for ITV's This Morning in Parliament on Monday, 20th January 2026, Nelson confronted the Health Secretary over the UK's failure to routinely test newborns for spinal muscular atrophy (SMA). Her twin babies, Ocean Jade and Story Monroe, were diagnosed with the condition late, after irreversible nerve damage had likely already occurred.
"Why did it have to take me to come along with a platform for people to take this seriously?" Nelson asked Streeting. The singer revealed that medics have told her the late diagnosis means her children will probably never walk.
Mr Streeting responded, calling it a "fair question" and praising Nelson's bravery for sharing her family's painful experience. He acknowledged his inbox was "full of families in a similar position."
The £5 Test That Could Save Lives
The meeting centred on The Mirror's campaign to add a simple, £5 check for SMA to the NHS newborn heel prick test. This would allow babies to be treated before irreversible damage is done in the first weeks of life.
Spinal muscular atrophy is a genetic condition that causes progressive muscle weakness and loss of movement. A one-off gene therapy called Zolgensma, made available on the NHS in 2021, can effectively cure the disease if administered early. However, its success depends on treatment before muscle neurons die off.
Pharmaceutical firm Novartis estimates that 33 UK babies every year are left in a wheelchair due to late diagnosis. Most other developed nations already include SMA in their standard newborn screening programmes.
The Devastating Impact of Delay
Jesy Nelson, joined by the charity SMA UK, detailed the rapid progression of the disease. She described watching her twins gradually move their legs less and less until movement stopped altogether after about a month.
"That’s how quick it is - and that’s why it is so vital to get treatment from birth," she explained. "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 severe Type 1 form of SMA, diagnosed late, often require a wheelchair, breathing support, feeding tubes, and overnight nursing care.
Government Response and Next Steps
In the meeting, Wes Streeting admitted he had not been fully aware of advances in testing and acknowledged the system "isn't working." He said Nelson had been "like a dog with a bone" in campaigning on the issue.
He pointed to progress, noting that the UK National Screening Committee has recommended a large-scale study into newborn screening for SMA. Hundreds of thousands of babies will be screened for SMA as part of an NHS trial.
In a statement released after the meeting, Streeting said it was a "privilege" to meet Nelson and that she had made a "powerful case." He added, "We are seeing children with SMA not just surviving but thriving" thanks to new treatments.
Rob Hastings, chief medical officer at Novartis UK, urged the government to expand screening across the UK to bring it in line with most European countries.
The singer's campaign comes amid reports she has split from her fiancé and the twins' father, Zion Foster. Her determined advocacy continues to push a critical public health issue to the forefront of the political agenda.
