Detailed text transcripts for TV channel - BBCNEWS - 20210616:09:53:00
So it costs the family £780 a month. we have been lucky, we've had friends do some crazy events and raise money for us but covid has obviously hugely affected that. you know, some of the other families we know, they've run out of money already, their kids are no longer on the product that was helping them and are doing worse for it. you know, they're back in hospital, they're back having lots of seizures. another family have sold their family home. so, you know, it's a very, very real crisis that we are all facing. we can't maintain private prescriptions and we need the government to act now ...