Former Little Mix star Jesy Nelson has shared the heartbreaking news that her newborn twin daughters have been diagnosed with a severe genetic condition, spinal muscular atrophy (SMA). Her announcement has cast a spotlight on a critical healthcare debate within the UK, as other families call for urgent changes to the National Health Service's screening programme.
A Family's Divergent Journeys with SMA
Rosie and Wes from Driffield, East Yorkshire, know the life-altering impact of an SMA diagnosis all too well. Their two children, five-year-old Marley and six-month-old Meadow, both have the same condition. However, their lives are on starkly different paths due to the timing of their diagnosis and treatment.
Marley was diagnosed at five months old. By the time he received the groundbreaking gene therapy drug Zolgensma at 16 months, his nervous system had already sustained irreversible damage. Today, Marley cannot walk or talk, requires a feeding tube, and needs daily respiratory support, including a ventilator at night.
In contrast, his baby sister Meadow was tested at birth. She received the same life-saving treatment within weeks. As a result, she is meeting all her developmental milestones, can roll over, and is expected to live a largely normal life with minimal breathing support.
The Crucial Fight for Early NHS Screening
The stark difference in their children's outcomes has driven Rosie and Wes to campaign alongside the charity SMA UK. They are pushing for SMA to be added to the NHS newborn blood spot test, which currently screens for ten other rare but serious conditions.
At present, the NHS only screens babies for SMA if they already have a sibling with the condition. This rule meant Meadow was tested only because of Marley's diagnosis. The charity estimates that around 47 babies were born with SMA in the UK in 2024, with one in 40 people carrying the gene that can cause it.
"The earlier you find out about newborn SMA, the earlier your life turns around," Rosie explained, highlighting the immense guilt felt by families whose children were diagnosed late. "Marley has complex needs and needs full daily life attention. Meadow is going to live a completely normal life."
Policy Review and a Hopeful Future
The UK National Screening Committee (NSC) initially recommended against universal SMA screening in 2018, citing limited evidence on long-term treatment outcomes and cost-effectiveness. However, the landscape has shifted significantly with the arrival of new, effective drugs like Zolgensma.
In response to these "significant developments," the NSC has conducted an external review of its decision. Further evaluation work is now scheduled to take place within the NHS, offering a glimmer of hope to campaigners.
Jesy Nelson, who welcomed twins Ocean and Story in May 2024 after a difficult pregnancy, shared on Instagram that her daughters were told they would likely never walk. She expressed profound gratitude for the treatment they have received, stating unequivocally, "If they didn’t have it, they would die." Her family's experience, alongside the powerful testimony of families like Rosie and Wes's, adds renewed weight to the call for systemic change in how the UK detects this devastating but treatable disease.
