flexible working. chris, really good to talk to you- flexible working. chris, really good to talk to you. i am glad to see you are takin: to talk to you. i am glad to see you are taking advantage to talk to you. i am glad to see you are taking advantage of to talk to you. i am glad to see you are taking advantage of that - to talk to you. i am glad to see you are taking advantage of that you i are taking advantage of that you would are taking advantage of that you would not be loving the story. they will not would not be loving the story. they will not let would not be loving the story. they will not let me! i have asked them. a baby with a fatal condition has received the world s most expensive drug after a campaign by his parents. 11 month old edward, from colchester, has severe spinal muscular atrophy which means he lacks a protein vital for muscle development. he received a new gene therapy which costs nearly 1.8 million pounds, at sheffield children s hospital. debbie
of summer. a very ominous indicator of what twitter might bring. what winter might bring. a baby with a fatal condition has received the world s most expensive drug after a campaign by his parents. 11 month old edward, from colchester, has severe spinal muscular atrophy, which means he lacks a protein vital for muscle development. he received a new gene therapy, which costs nearly £1.8 million at sheffield children s hospital. debbie tubby from bbc look east reports. edward just needs this one single infusion to transfer his life. it s a new gene therapy called zolgensma, costing £1.79 million, administered at the children s hospital in sheffield. without medical intervention, he wouldn t live to his second birthday. his parents have been scared he wouldn t get this amazing chance of life. yay! we re just so relieved, excited, scared, apprehensive, nervous absolutely, completely petrified.
£1.79 million and is administered at the children s hospital in sheffield. without medical intervention, he would not live until his second birthday point of his parents have been scared he would not get the amazing chance of life. we would not get the amazing chance of life. ~ ., , would not get the amazing chance of life. 2 . , ,., ., life. we are ust so relieved and excited, life. we are just so relieved and excited, scared life. we are just so relieved and excited, scared and life. we are just so relieved and i excited, scared and apprehensive. nervous. absolutely completely petrified! it is a game changer, it is absolutely changed the face of sma. , ., , ., , , sma. this was when he was seven weeks old in sma. this was when he was seven weeks old in hospital sma. this was when he was seven weeks old in hospital having i sma. this was when he was seven weeks old in hospital having just l weeks old in hospital having just been resuscitated by his dad put it was later diagno
and coming up this hour. he s worked with some of hollywood s biggest stars, but 16 year old noahjupe tells us how even he was scared by his film a quiet place 2. filming it wasn t scary, but then when i went to the cinema and watched the first one, i was so scared. a five month old boy from london has become one of the first children to be treated with a ground breaking new gene therapy. arthur morgan, who has spinal muscular atrophy, is being treated with zolgensma. at a cost of £1.79 million per patient, it is the world s most expensive drug. the nhs has negotiated a confidential discount. and this means that potentially dozens of infants could be treated
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