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BBCNEWS The Travel Show January 7, 2022 11:48:00

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 ....

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BBCNEWS BBC News January 7, 2022 10:44:00

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 would qualify for it. how do you describe the love for your child? especially when you ve been through something so traumatic as what we ve been through but not only that, the thought of actually losing him was very, very, very real. and so it makes you appreciate every ....

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BBCNEWS BBC News at One January 7, 2022 13:19:00

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 would qualify for it. the thought of actually losing him was very, very, very real. and so it makes you appreciate every single little thing every tantrum i appreciate because he can. he s got the strength to be a naughty boy, you know? and it s all those things that ijust didn t even think he would ever be able to do. spinal muscular atrophy can be detected in newborns using a simple heel prick blood test. the condition affects one in 10,000 babies. great 0rmond street is calling for all newborns to be given the test. ....

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BBCNEWS Desmond Tutu Remembered January 7, 2022 14:50:00

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 would qualify for it. the thought of actually losing him was very, very, very real. ....

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BBCNEWS HARDtalk January 7, 2022 09:45:00

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 would qualify for it. how do you describe the love for your child? especially when you ve been through something so traumatic as what we ve been through but not only that, the thought of actually losing him was very, very, very real. ....

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