25 May 2021 - A baby with a fatal genetic condition has been "abandoned" in a "race against time" for the world's most expensive drug, his parents said.

Eight month old Edward, from Colchester, has severe spinal muscular atrophy, meaning he lacks a protein vital for muscle development.

The new gene therapy Zolgensma would transform his life but Edward has not been approved to have it as yet.

NHS England says doctors will assess who will receive the £1.79 million treatment.

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