last year, zolgensma, a highly effective treatment for the rare genetic disorder spinal muscular atrophy was approved for use on the nhs. it's the world's most expensive drug and has the potential to save the lives of babies with the condition. one—year—old edward was given the drug in august and it's changed his life. zoe conway has been to meet him and his mum megan. he's just my little boy, just completely in awe of him, he's like the strongest little baby i know. i'm just so proud of him. he's just doing so well. edward was born with the genetic condition spinal muscular atrophy. it causes progressive muscle weakness. as a baby, edward became floppy, he couldn't move his legs. doctors feared that one day he might lose the ability to breathe. and then along came the most expensive drug in the world — zolgensma.
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