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NHS drugs go-ahead offers lifeline to children with rare muscle-wasting disease
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NHS drugs go-ahead offers lifeline to children with rare muscle-wasting disease

The Guardian · May 13, 2026, 11:01 PM

Key takeaways

  • Ezra Thorman started treatment with nusinersen when he was a baby and his mother, Portia, says it saved his life.
  • Prefer the Guardian on GoogleHundreds of children with a rare muscle-wasting disease will be able to receive two drugs that can improve their survival in a move parents hailed as a “lifeline”.
  • The National Institute for Health and Care Excellence (Nice) has published final draft guidance recommending that any patient who would benefit can have either drug.

Why this matters: a developing story that could shape the day's news cycle.

Ezra Thorman started treatment with nusinersen when he was a baby and his mother, Portia, says it saved his life. Photograph: Courtesy of Thorman family View image in fullscreen Ezra Thorman started treatment with nusinersen when he was a baby and his mother, Portia, says it saved his life. Photograph: Courtesy of Thorman family Children NHS drugs go-ahead offers lifeline to children with rare muscle-wasting disease Medicines watchdog approves two treatments for patients with spinal muscular atrophy

Prefer the Guardian on GoogleHundreds of children with a rare muscle-wasting disease will be able to receive two drugs that can improve their survival in a move parents hailed as a “lifeline”.

The National Institute for Health and Care Excellence (Nice) has published final draft guidance recommending that any patient who would benefit can have either drug.

Article preview — originally published by The Guardian. Full story at the source.
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