Newborn babies throughout England will undergo screening for spinal muscular atrophy, a genetic disorder characterized by progressive muscle weakness affecting movement, breathing, and swallowing functions. In severe cases, the condition can be fatal before age two. The screening initiative follows a sustained campaign by former Little Mix member Jesy Nelson, whose twin daughters Ocean Jade and Story Monroe Nelson-Foster were diagnosed with the condition earlier this year. Nelson has publicly discussed her daughters’ prognosis and medical needs, including the use of spinal jackets and foot splints.
Early intervention through gene therapy can address the underlying genetic defect responsible for SMA, but treatment must occur before symptoms manifest, as these therapies cannot reverse existing damage. The screening test utilizes a blood sample obtained through a heel prick shortly after birth. Scotland already operates an SMA screening program. In England, screening will begin in October 2026 as part of a research study, with full nationwide expansion anticipated by October 2027. Hundreds of thousands of babies are expected to participate in the study, which will be conducted by researchers at the University of Oxford.
The results will inform the UK National Screening Committee’s determination regarding permanent implementation of SMA testing. Previous iterations of the proposal, which would have covered only 72% of England, generated controversy. Health Secretary James Murray expressed support for the initiative and acknowledged the advocacy efforts of campaigners. Parents of children with SMA have expressed hope that Wales will adopt similar screening measures.