Overview
- Jesy Nelson shared a video of 11‑month‑old Story saying “Muma,” underscoring her push for newborn screening after both twins were diagnosed with Spinal Muscular Atrophy Type 1.
- UK Health Secretary Wes Streeting announced plans for a pilot from October 2026 to test more than 400,000 newborns in England for SMA, a rare genetic disease that weakens muscles.
- The pilot will run only in selected regions at first, which Nelson says could leave some families without early checks in what she calls a postcode lottery.
- Her caregiving burden grew after her Black Defender was stolen on April 19 in Essex with vital hospital equipment inside, leading her to offer a £10,000 reward after it was last tracked near Chelmsford.
- SMA Type 1 can impair breathing and movement from infancy, and NHS‑approved drugs such as nusinersen can slow progression when given early, which is why campaigners want screening at birth; a public petition has now reached a parliamentary debate.