The Mirror is today spearheading a vital campaign to end the needless paralysis of babies across the UK, driven by the heartbreaking story of pop star Jesy Nelson and her twin daughters.
A Mother's Devastating Diagnosis
Former Little Mix singer Jesy Nelson has revealed in an emotional interview how her newborn twins, Ocean Jade and Story Monroe Nelson-Foster, gradually lost the use of their legs in their first weeks of life. The 34-year-old first-time mum, who gave birth prematurely in May with fiancé Zion Foster, received a belated diagnosis of Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the muscle-wasting disease.
Speaking tearfully on ITV's This Morning, Jesy described the agonising decline she witnessed. "Every day I would start to see it gradually less and less," she said. "They are moving their legs, then in week two and three it gets less and less and then after a month it just stops. That's how quick it is."
The £5 Test That Could Change Lives
The central issue, as highlighted by The Mirror's campaign, is the absence of a routine £5 blood test for SMA within the NHS newborn heel prick screening programme. This simple test is standard in most other developed nations.
Jesy's anguish stems from the knowledge that effective gene therapies like Zolgensma exist on the NHS and can prevent paralysis, but only if administered at birth before irreversible nerve damage occurs. "If these were the cards I was always going to be dealt... it's almost easier to accept," she said. "But when you know there is something that could be done about it... that's the part that I cannot accept."
The family has been told the twins will likely never walk or regain full neck strength and will require wheelchairs.
The Shocking National Picture
Our investigation reveals the staggering scale of this preventable tragedy. An estimated 50 babies a week in the UK are born with SMA, yet in almost all cases, it is not diagnosed at birth. Pharmaceutical firm Novartis estimates that 33 of these babies will be left needlessly paralysed each year due to the lack of newborn screening.
Currently, without an older sibling with SMA, diagnosis is typically delayed until parents repeatedly report that their baby is not lifting its head or moving. By then, permanent damage is often done. Scotland has announced it will start screening newborns for SMA this spring, but the test remains unavailable elsewhere in the UK.
Giles Lomax, chief executive of SMA UK, emphasised the urgency: "Newborn screening saves lives. For conditions like spinal muscular atrophy, early diagnosis is critical... Time is neurons."
Rob Hastings, Novartis UK Chief Medical Officer, added: "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."
The Mirror has been at the forefront of this issue since 2021, reporting on groundbreaking treatments. We now demand immediate government action to add this life-saving £5 test to the NHS routine, ensuring no more families endure the pain faced by Jesy Nelson and her children.
