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Jesy Nelson Shares New Video of Daughter as She Presses NHS for SMA Newborn Screening

Her appeal follows disclosure that her twins have SMA Type 1, a time‑critical condition with treatments that are most effective when started early.

Overview

  • Nelson posted an Instagram clip of herself laughing and playing with one of her twins days after revealing their SMA Type 1 diagnoses.
  • She appeared on This Morning to urge the NHS to add a heel‑prick test for spinal muscular atrophy to routine newborn screening.
  • Nelson said SMA Type 1 can be fatal in infancy without prompt care and that her daughters began treatment quickly because timing is critical.
  • Parent advocate Sophie Cooke said babies in the UK are not currently screened for SMA and called for nationwide testing.
  • Cooke described her son Sid’s diagnosis at four months and his one‑off Zolgensma gene therapy in 2021, noting encouraging progress alongside ongoing support needs.