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BBCNEWS Bittersweet Medicine June 4, 2024 16:32:00

An absolute blessing. they re literally walking, running miracles, you know? they shouldn t be here. i m fergus walsh, the bbc s medical editor. i ve been following the first patient treated by the nhs with this life saving drug, and meeting families affected by one of the rarest and cruellest of genetic conditions. # nala, charlie, nala, charlie shaw. this is the shaw family, from northumberland. mum and dad, ally and jake, and their two daughters, nala and teddi. i ve always said nala saved teddi s life. and that s how i ve wanted to think about it. whee! the family are living ....

Shouldn T , Fergus Walsh , Charlie Shaw , Saved Teddi ,

BBCNEWS Newsday June 4, 2024 01:16:00

If we unite and fight to save our country. a one year old girl born with a rare condition that severely damages the brain and the nervous system has become the first child to be treated by britain s national health service using a new life saving gene therapy. the treatment costs just under £3 million that s around 11.5 million us dollars and is the most expensive medicine ever approved in the uk. the girl, teddi, was diagnosed after her three year old sister, nala, had developed the same life limiting condition which is known as mld. 0ur medical editor fergus walsh reports. teddi and nala have mld, metachromatic leukodystrophy. this little piggy went to market. children are born apparently healthy, but the condition gradually attacks the brain and body. ..all the way home. ....

Nervous System , Old Girl , Gene Therapy , National Health Service , 11 5 Million Us Dollars , 3 Million , 11 5 Million , Fergus Walsh , 0ur Medical Editor , All The Way Home , Metachromatic Leukodystrophy ,

BBCNEWS Newsday June 4, 2024 00:18:00

Children s hospital having stem cells removed from her blood, the first stage of a ground breaking gene therapy. so, when they told us that there was treatment available for teddi, it was kind of like, a bit like a bit of a bitter pill to swallow because nala can t be helped, so you know, we are extremely grateful in one sense and then really sad on the other. two months later, teddi s personalised therapy, called libmeldi, is ready. scientists have added a working copy of the faulty gene which causes mld to teddi s cells. they re your cells. libmeldi costs more than £2.8 million, though the nhs has agreed a confidential discount. this one off infusion aims to stop teddi s disease in its tracks. teddi will need to spend several more weeks in hospital ....

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BBCNEWS Newsday June 4, 2024 01:19:00

Fewer than ten children a year in the uk are likely to be eligible for libmeldi. one reason why the price tag is so high. teddi s doctors are trialling similar treatments for other rare conditions. i think it will be transformative in genetic diseases. libmeldi shows that we can take their own stem cells, put in the gene that their illness is deficient or faulty in, and correct the condition. teddi can expect a healthy future. but nala is terminally ill. her parents want mld screened for at birth, so it s always picked up early enough for treatment. fergus walsh, bbc news. to antarctic glaciers now which may be more sensitive to changes in sea temperature than was previously thought that s according to new research. the work is the result of the biggest land based survey ever undertaken on the continent. ....

Price Tag , Stem Cells , Bbc News , Fergus Walsh , Sea Temperature ,

BBCNEWS Newsday June 4, 2024 01:17:00

Are you a ladybird? ladybird! this was nala when she was two. now, a year later, she can t walk or talk and is tube fed. her body is basically kind of gradually shutting down. she will lose her eyesight, she will lose most of her senses and it will basically come to a point where there is nothing left for her to lose. nala s mld progressed too far for her to be treated. but it meant the condition was picked up in her sister teddi before damage was done. she s at royal manchester children s hospital having stem cells removed from her blood, the first stage of a ground breaking gene therapy. so, when they told us that there was treatment available for teddi, it was kind of like, a bit like a bit of a bitter pill to swallow because nala ....

Stem Cells , Royal Manchester Children S Hospital , Gene Therapy ,