Overview
- Nelson posted on Instagram on Friday that she had “cried all day” after seeing her 14-month-old twins wear spinal jackets and splints during a UK heatwave to stop spine and foot deterioration.
- She also shared a brief positive milestone when one daughter sat upright in her wheelchair, a gain Nelson framed as small but meaningful amid intensive daily care.
- The twins were diagnosed with SMA Type 1 in January, a severe infant-onset genetic condition that has left them unlikely to walk and needing breathing support at night and feeding tubes.
- Nelson has led public pressure for newborn SMA screening, collecting more than 150,000 petition signatures and speaking at a parliamentary debate, and she has vowed to continue campaigning.
- Policy makers say a staggered screening rollout will begin in October covering about 72 percent of England at first because seven of 13 testing labs will be used while officials evaluate effectiveness and laboratory capacity.