Jesy Nelson's Fight Brings SMA Testing to UK Babies

Jesy Nelson has achieved a significant victory in her campaign for expanded newborn screening for Spinal Muscular Atrophy (SMA). Beginning in October 2026, the NHS will implement heel prick testing for SMA on over 400,000 babies in England. This crucial development follows Nelson's personal experience after her nine-month-old twins, Ocean and Story, were diagnosed with SMA Type 1, a rare muscle-wasting condition. The late diagnosis means her daughters face severe challenges, including potential lifelong mobility issues and reliance on breathing and feeding equipment. Nelson's persistent advocacy urged the health secretary to override previous committee guidance, leading to this accelerated screening plan. This decision is hailed as a major milestone for the SMA community, promising earlier detection and improved access to life-changing treatments for affected newborns across England.