Overview
- Nelson’s twin daughters, Ocean Jade and Story, were publicly revealed to have been diagnosed with spinal muscular atrophy (SMA) Type 1 in January, which she says prompted her to campaign for change.
- She has led a public campaign supported by SMA UK and media partners and will devote an extra episode of her Prime Video series to the twins’ diagnosis and the call for newborn testing, scheduled to air on July 17.
- Health Secretary Wes Streeting and government sources confirmed the pilot for SMA testing via the five‑day newborn heel‑prick blood test will now start in October 2026 and is expected to cover about 400,000 babies.
- A petition to add SMA to the NHS newborn screening will be debated in Parliament on June 22, a step Nelson welcomed as advancing the campaign from advocacy to formal political review.
- SMA Type 1 is a severe, early‑onset motor‑neuron disease that can be life‑limiting without timely intervention, so routine newborn screening could allow earlier treatment access and change outcomes for affected infants.