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Mother s agony as three-year-old daughter s squint turns out to be a deadly brain disorder that kills most kids before they turn five

Nellie (pictured), from Brighton, was diagnosed with metachromatic leukodystrophy - a rare genetic disease causing severe damage to the nervous system and organs.

Eastbourne mum faces fear of heights for 3-year-old daughter

A brave mum is facing her fear of heights by abseiling down the i360 for her terminally ill daughter.

Donors respond as Foodbank reaches out again in time of need

Transcripts for BBCNEWS HARDtalk 20220107 09:44:00

last year, 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 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.

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