A mother is having to pay more than £2000 a month to access the cannabis oil she says is keeping her son alive.
Ben Griffiths has epilepsy and can have up to 100 seizures a day. His condition is so severe he usually wears a helmet.
He can bang his head, his back, his body. He can sometimes be thrown across the room violently.
Since Ben has been taking medicinal cannabis, his seizures have fallen from 100 a day, to ten.
Medicinal cannabis was made legal six months ago, but children like Ben still haven't been able to get a prescription on the NHS.
It's left his family to pick up the cost themselves - getting the medication from a private doctor.
Ben's family are among hundreds who protest that the conditions for NHS prescribed cannabis are too restrictive.
The Department of Health and Social Care told ITV News "To support doctors prescribing these products, we have asked the National Institute of Health and Care Excellence to develop additional clinical guidelines and are working with Health Education England to provide additional training."
We are also promoting more research to further improve the evidence base, and where products have been prescribed, they have been imported to meet the patients' needs.