Former Little Mix singer Jesy Nelson has called for the addition of a £5 blood test for spinal muscular atrophy (SMA) to the newborn heel prick test, after her twin daughters were diagnosed with the rare condition. The babies, Ocean Jade and Story Monroe Nelson-Foster, were born in May.
SMA, previously known as “floppy baby syndrome”, can leave infants paralysed if not treated immediately after birth. Gene therapies can prevent severe disability, but only if administered before irreversible nerve damage occurs. The Mirror revealed in 2024 that around one baby every week is left paralysed while the NHS delays implementing routine screening.
Health Secretary Wes Streeting responded to Ms Nelson's public appeal, saying: “My heart goes out to Jesy Nelson… She’s challenged us to go further on screening, and she is right to do so.” He added that he is determined to improve the use of genomic medicine and address delays in diagnosis.
Currently, babies are typically diagnosed in England only after parents repeatedly report symptoms such as the infant not lifting its head. The UK National Screening Committee is planning a pilot in some areas, but a national rollout could take years. In contrast, NHS Scotland already screens all newborns for SMA.
Ms Nelson described the past months as “the most gruelling” and urged that a simple heel prick test, already used in many countries, could “literally save their legs” and prevent death. Her advocacy has prompted the Health Secretary to pledge a review of screening for SMA and other genetic conditions.
