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). The singer revealed that her babies, Ocean Jade and Story Monroe, are unlikely to ever walk due to SMA Type 1, a disease that progressively weakens muscles.
A family's contrasting journey with SMA
Among the many messages of support for Jesy Nelson were those from parents Rosie and Wes from Driffield, East Yorkshire. They know the realities of SMA all too well, as both of their children have the condition, but with starkly different outcomes due to the timing of their diagnosis and treatment.
Their five-year-old son, Marley, was diagnosed at five months old. By that point, irreversible damage to his nervous system had already occurred. Marley cannot walk or talk, requires a feeding tube, and needs daily respiratory support, including a ventilator at night.
In contrast, their six-month-old daughter, Meadow, was tested at birth. This allowed for immediate intervention. She received the groundbreaking gene therapy drug Zolgensma within weeks and is now hitting all her developmental milestones, expected to live a largely normal life.
The critical campaign for earlier NHS screening
Rosie and Wes are now championing a campaign by the charity SMA UK. They are calling 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 in England only routinely tests newborns for SMA if they have an older sibling already diagnosed with the disease. This policy meant Meadow was only tested because of Marley's existing condition.
An estimated 47 babies were born with SMA in the UK in 2024, according to SMA UK, with around one in 40 people carrying the gene that can cause it. The treatment, Zolgensma, is a one-time infusion that delivers a healthy copy of the faulty gene, but its effectiveness is critically dependent on being administered before significant nerve damage occurs.
Why screening policy is under review
In 2018, the UK National Screening Committee (NSC) advised against universal SMA screening, citing limited evidence on long-term treatment outcomes and questions of cost-effectiveness for the health service.
However, in light of significant medical advancements like new drug therapies, the NSC has since conducted an external review of that decision. Further evaluation work within the NHS is now scheduled.
For families like Rosie and Wes's, and now Jesy Nelson's, changing the screening policy cannot come soon enough. "The earlier you find out about newborn SMA, the earlier your life turns around," Rosie told the BBC. The disparity between their children's futures fuels their campaign, hoping to spare other families the same heartache and guilt they have experienced.
