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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. it costs £1.8 million, although the nhs got a discount and approved it for use last may. this is edward being given zolgensma via a drip last august. the one off treatment lasted an hour. in that time, his life was transformed. his muscle tone is a lot stronger. he s almost feeling like a child that doesn t have sma. he can roll, he can hold his head. i mean, honestly, it s endless, what he can do, compared to what he was doing before treatment. it s incredible. # if you see a crocodile.# the earlier a baby is given the drug, the better ideally before the symptoms start. it wasn t clear whether edward
edward has been transformed. 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. it costs £1.8 million, although the nhs got a discount and approved it for use last may. this is edward being given zolgensma via a drip last august. the one off treatment lasted an hour. in that time, his life was transformed. his muscle tone is a lot stronger.