Overview
- The twins, Ocean Jade and Story Monroe Nelson-Foster, were born prematurely at about 31 weeks in May 2025.
- Specialists at Great Ormond Street Hospital told the parents the girls will probably never walk or regain neck strength, leaving them disabled.
- Nelson says urgent treatment has begun and that without it the disease is fatal, as she now manages breathing machines and intensive home care.
- She urged parents to seek checks quickly if they notice signs like weak movement or feeding problems, stressing that time is crucial for outcomes.
- Coverage notes UK newborn screening does not routinely test for SMA, though NHS-approved therapies such as gene therapy Zolgensma can help when given early.