Overview
- The eight‑month‑old sisters, Ocean Jade and Story Monroe, were diagnosed after months of assessments that culminated at Great Ormond Street Hospital.
- Clinicians told Nelson the girls will probably never walk or regain neck strength, indicating long‑term disability.
- Nelson says she has become their full‑time carer, learning to use breathing machines at home and spending extended periods in hospital.
- The twins were born prematurely in May following a pregnancy complicated by twin‑to‑twin transfusion syndrome that required surgery and a lengthy hospital stay.
- Her disclosure adds to calls to include spinal muscular atrophy in the UK newborn blood spot test, with charities stressing outcomes improve when treatment begins in the first days of life.