Overview
- Nelson said on ITV’s This Morning that she has started an online petition to add spinal muscular atrophy to the newborn heel prick test.
- Health Secretary Wes Streeting publicly backed her challenge to the screening process, saying she is right to question delays to diagnosis.
- Her eight-month-old twins received a one-off gene therapy infusion soon after diagnosis, which can preserve remaining function but cannot restore lost motor neurons.
- One daughter uses night-time breathing support and both have feeding tubes, as Nelson described learning complex care at home within days of the diagnosis.
- SMA is not part of routine NHS newborn blood-spot screening, Scotland plans to introduce screening in spring 2026, and a UK evaluation approved in 2025 remains on hold pending NHS England’s formal commitment.