Former Little Mix star Jesy Nelson has welcomed a major shift in public health policy, describing the government's plan to test all newborn babies in England for spinal muscular atrophy (SMA) as a "victory for every family" affected by the condition. Nelson, who has been a vocal campaigner for such screening, has personal experience with the disease after her own twin daughters were diagnosed with the genetic condition.
SMA is a serious disease that causes muscle weakness, impacting a child's ability to walk, swallow, and breathe. In its most severe form, the condition can be fatal before a child reaches the age of two. While pioneering gene therapies exist that can correct the genetic defect responsible for SMA, these treatments must be administered before symptoms emerge to be effective, as they cannot reverse damage that has already occurred. This medical reality has fueled the urgent push for universal newborn testing.
Nelson has previously spoken openly about the challenges her daughters, Ocean Jade and Story Monroe Nelson-Foster, face, including being told they might "never walk." In a recent social media post, she shared the difficulties of her twins needing to wear foot splints and spinal jackets during a heatwave. In a trailer for her upcoming Prime Video documentary, Jesy Nelson: Life Changing, the singer expressed the deep emotional toll, stating, "I feel like I'm going to feel heartbroken for the rest of my life."
The new screening initiative will be implemented as part of a significant study led by researchers at the University of Oxford, with hundreds of thousands of infants expected to be tested using a standard heel prick blood sample. While Scotland already offers screening for SMA, the program in England is set to begin in most areas by October 2026, with full expansion scheduled for October 2027. This timeline follows previous controversy over plans that would have limited access to only 72% of the country. Jesy Nelson was left 'outraged' after MPs held a debate regarding the muscle condition that affects her twins.
Reflecting on the milestone, Nelson remarked that "Today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I'm incredibly proud to have supported." She noted that "This is a victory for every family affected by SMA. Whilst it can't change the future of our children, I know it marks the beginning of a brighter future for future SMA families." Health Secretary James Murray expressed his admiration for the campaigners, adding that no parent should have to witness their child lose the ability to move or breathe when earlier intervention could have provided a different outcome.
The data collected from the upcoming study will be used by the UK National Screening Committee to determine if SMA testing should be adopted permanently.
