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Jesy Nelson Marks Twins’ First Birthday With Renewed Push for SMA Newborn Screening

Nelson’s campaign helped bring an NHS trial to October 2026 under a design critics say creates a postcode gap.

Overview

  • Nelson, who posted a video Friday reciting “Welcome to Holland,” celebrated her twins turning one and called them resilient fighters.
  • SMA Type 1 is a severe genetic disease that weakens muscles and can affect breathing and swallowing, and she has said her daughters are unlikely to walk or regain neck strength.
  • After going public in January, she met Wes Streeting, visited No 10, and became a patron of SMA UK to press for spinal muscular atrophy to be added to the newborn heel‑prick test.
  • Her petition for nationwide screening has passed about 100,000 signatures, triggering a debate in Parliament and keeping pressure on policymakers.
  • The government moved a screening trial forward to October 2026 for about 404,000 babies in phases, but about 163,000 would not be tested as a control group, which she argues creates an unfair postcode lottery.