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Jesy Nelson Shares Twins’ First Feed in Specialised Chairs After SMA Diagnosis

The post renews pressure for universal newborn SMA checks given a limited rollout set for October 2026.

Overview

  • Nelson posted a video Tuesday showing 11‑month‑old Ocean and Story eating in their specialised feeding chairs for the first time.
  • SMA Type 1 is a severe genetic condition that weakens muscles needed for movement, swallowing, and breathing.
  • The twins have received a one‑off gene therapy infusion that can halt further muscle loss but cannot restore strength already lost.
  • Daily care remains intensive, with feeding tubes, splints for their feet, and a night‑time breathing machine for Story.
  • Nelson is campaigning for newborn SMA screening as the government plans to begin checks in October 2026 in only selected areas of England.