England to Screen Newborns for SMA After Nelson Campaign
Get the Culture newsletter
Daily culture — film, music, books, the trends and ideas worth your attention. Free.
- Jesy Nelson's Prime Video documentary "Life Changing" follows her premature twins Ocean and Story being diagnosed with spinal muscular atrophy (SMA) at seven months old, a condition her mother Janice White first flagged when she noticed the girls weren't kicking their legs.
- The film reveals that SMA is still not part of standard UK newborn screening — a delay that meant the twins missed the window for gene therapy, which could have stopped their muscles from wasting if administered at birth.
- Without early treatment, the twins are likely to need equipment to move, eat, sit up, and possibly breathe; the documentary notes that children undiagnosed with SMA would probably die by age two.
- Nelson became a patron of SMA UK and publicly grilled then-Health Secretary Wes Streeting on breakfast TV as part of her drive to add SMA to the standard newborn heel-prick blood test.
- The day before the documentary aired, the UK government announced every baby in England will be screened for SMA from October — Scotland already tests newborns for SMA with results in 66 minutes, while Wales and Northern Ireland remain uncovered.
- Nelson and fiancé Zion Foster broke up during filming, with her mother now providing full-time care for the twins, including handling meals repeatedly interrupted by the babies' needs.
Why it matters: Every baby in England will be screened for SMA from October — a policy win Nelson personally drove after her twins were diagnosed late enough that gene therapy could only partially help. Wales and Northern Ireland are still excluded, meaning the fight isn't over for roughly 1 in 10 UK newborns.
