Overview
- Nelson revealed her eight-month-old twins, Ocean and Story, have SMA type 1 after being born prematurely in May and said they have received a one‑off gene therapy infusion.
- Clinicians have warned the girls will probably never walk or regain neck strength, and Nelson described using night-time breathing support and feeding tubes at home.
- She has launched a petition to add SMA to the newborn blood spot test, arguing early detection could be life‑changing and noting early signs were missed in part due to prematurity guidance.
- Health Secretary Wes Streeting publicly backed her challenge to screening delays, as the UK National Screening Committee advances a large‑scale study with an NHS trial set to screen hundreds of thousands of babies.
- Scotland plans to introduce newborn SMA screening in the spring, while the test is not yet routine elsewhere in the UK.