Jesy Nelson's twins spur EU push for expanded newborn heel‑prick screening

Former Little Mix singer Jesy Nelson’s twin daughters were diagnosed with spinal muscular atrophy type 1 (SMA), a rare muscle‑wasting disease that can be fatal before age two without early treatment. Nelson has campaigned for SMA to be included in the UK newborn heel‑prick test, which is set to roll out in October, and her advocacy helped Ireland add SMA to its panel in April.

Irish MEP Billy Kelleher, a member of the European Parliament’s Public Health Committee, said the disparity in neonatal screening across EU states – Ireland testing for 11 conditions versus the EU average of 18 and Italy testing for over 50 – is unacceptable. He called for a centralized EU approach so that every child, regardless of birthplace, receives the same screening, emphasizing the health benefits and data value of a uniform programme. Ethical concerns about early genetic diagnosis have been raised, but Kelleher indicated the EU is moving beyond that debate.

Nelson’s public sharing of her daughters’ condition, including a recent video of one twin sitting upright in a wheelchair, has drawn widespread support and renewed attention to newborn testing policies across Europe.