Overview
- On Saturday Jesy Nelson posted an Instagram Story showing her giving physiotherapy to her one-year-old twins, Ocean and Story, as she continues to document their daily care.
- The twins were diagnosed with Spinal Muscular Atrophy Type 1 in January and are receiving treatment now, though the late diagnosis means they are likely to never walk and may need night-time breathing support and feeding tubes.
- Nelson has described the daily medical routines as intensely distressing and has kept filming a Prime Video series to record the family’s experience and push for change.
- The UK Government told Nelson and SMA UK that a petition to add SMA to newborn screening will be debated in Parliament on 22 June and that an accelerated in-service pilot will begin in England in October 2026.
- If the pilot expands 'heel prick' testing for SMA it could detect affected babies earlier when approved therapies work best, which advocates say may increase access to timely treatment for hundreds of thousands of newborns.