Overview
- Nelson says her eight-month-old twins, Ocean and Story, have SMA Type 1 and are now under urgent care at Great Ormond Street Hospital with feeding tubes and night-time breathing support.
- She is urging a routine heel-prick test for SMA at birth, highlighting that it costs about 36p and is already used in dozens of countries including the United States.
- Scotland plans to introduce newborn SMA screening in the spring, and the UK National Screening Committee has commissioned a reassessment of its guidance.
- Health Secretary Wes Streeting said Nelson was right to question diagnostic delays and vowed to consider screening and broader use of genomic medicine.
- Disability advocates, including Frances Ryan and Sophie Morgan, criticized Cat Deeley’s wording on This Morning and called for more disabled voices in coverage as families shared messages of support and hope.