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
this week alone i m missing a whole day of school. so what will you have to do to catch up? i will have to catch up over the weekend. but when i ask her about her sister, lena, this strong, determined young woman breaks down. i know, come on. only good stuff. yeah? one more? yeah. unable to lift her hands, her mother wipes away her tears and gives her the strength to carry on. i think it s amazing. i wasn t able to walk from the age of one and a half. i wasn t able to run. i wasn t able to even crawl. so, yeah, ithink it s quite amazing. zolgensma has only been on the market for five years, so it s still unclear what effect it will have over the longer term, but the hope is that children like lena will forever be free of this disease.
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.
but it rings hollow in a country that disagrees on how to define an attack that almost broke its democracy. nomia iqbal, bbc news, washington. last year the world s most expensive drug was approved for use in the uk for the treatment of the rare genetic disorder, spinal muscular atrophy. one year old edward was given zolgensma in august, and it s changed his life. zoe conway reports. 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.
to the latest figures. meanwhile the armed forces have sent 200 personnel into hospitals across london to help with staff shortages. dementia cases are expected to almost triple across the world by 2050. experts say it s down to ageing and growing populations. injune, 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