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BBCNEWS Bittersweet Medicine June 4, 2024 03:39:00

It s a personalised treatment. teddi s blood is being filtered to collect stem cells. these will have a working copy of the faulty gene added to try to stop the disease doing further damage. if she understood, then she might cope with it a bit better. but she just keeps looking at people saying, why are you doing it? i feel like she s looking at me going, mum, why are you doing this to me? all done! all done for today. hopefully got them all. and here are teddi s stem cells. the first stage of her treatmentjourney is over. so this box, which contains the bag of stem cells collected this morning from teddi, is going now to italy. scientists in milan will insert the missing gene. it s the only place in europe where this lab work is done. it ll be a few weeks before teddi is back in manchester to receive her modified cells the personalised treatment ....

Saved Teddi , Stem Cells , Working Copy , Lab Work , Personalised Treatment Called Libmeldy ,

BBCNEWS Bittersweet Medicine June 4, 2024 03:32:00

And for her to receive this treatment is just 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 under the shadow of a devastating disease a rare life limiting ....

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

BBCNEWS Bittersweet Medicine June 4, 2024 00:37:00

Untreatable, incurable, and very life limiting disease. so how does a single faulty gene cause so much damage in children with mld? so there s mistakes in a gene, which means the body can t make an enzyme. the job of that enzyme is to break down a really important chemical for how our brain functions and works. and so, it gradually builds up and builds up in the brain until this catastrophic point, usually by the age of two, where children start to lose, as i said, all of those abilities. but now, there s a treatment for children with mld a form of gene therapy called libmeldy. it s a medicine which can help one of the shaws daughters, but not both. so when they told us that there was treatment available for teddi, it was, kind of, like, a bitter pill to swallow because nala can t be helped. so, you know, we re extremely grateful, in one sense, ....

Brain Functions , Gene Therapy , Can T ,

BBCNEWS Breakfast June 4, 2024 06:40:00

Life limiting disease. so how does a single faulty gene cause so much damage in children with mld? so there s mistakes in a gene, which means the body can t make an enzyme. the job of that enzyme is to break down a really important chemical for how our brain functions and works. and so, it gradually builds up and builds up in the brain until this catastrophic point, usually by the age of two, where children start to lose, as i said, all of those abilities. but now, there s a treatment for children with mld a form of gene therapy called libmeldy. it s a medicine which can help one of the shaws daughters, but not both. so when they told us that there was treatment available for teddi, it was, kind of, like, a bitter pill to swallow ....

Motor Neurone Disease , Brain Functions , Gene Therapy ,

BBCNEWS Breakfast June 4, 2024 06:42:00

It s a personalised treatment. teddi s blood is being filtered to collect stem cells. these will have a working copy of the faulty gene added to try to stop the disease doing further damage. if she understood, then she might cope with it a bit better. but she just keeps looking at people saying, why are you doing it? i feel like she s looking at me going, mum, why are you doing this to me? all done! all done for today. hopefully got them all. and here are teddi s stem cells. the first stage of her treatmentjourney is over. so this box, which contains the bag of stem cells collected this morning from teddi, is going now to italy. scientists in milan will insert the missing gene. it s the only place in europe ....

Saved Teddi , Stem Cells , Working Copy , Motor Neurone Disease ,