Overview
- Nelson used a live This Morning appearance to press her petition to add spinal muscular atrophy to the newborn heel prick test.
- Her eight‑month‑old twins, Ocean Jade and Story Monroe, were born at 31 weeks, have SMA Type 1, received a one‑off gene‑replacement infusion, and clinicians warn they will probably never walk.
- Health Secretary Wes Streeting said she was right to challenge how long diagnosis takes and backed scrutiny of the screening process.
- SMA is not included in the routine newborn blood spot test across most of the UK, with a UK in‑service evaluation approved in February 2025 yet to start as it awaits NHS England’s formal commitment, while Scotland plans to begin screening in spring 2026.
- SMA UK and clinical experts say outcomes improve dramatically with pre‑symptomatic treatment, and they caution that prematurity can obscure early warning signs.