A Northampton mother joined a march on No 10 yesterday to hand over a 570,000 strong petition to loosen the restrictions on medical cannabis.
Julie young, from Brixworth, says she was thinking of her epileptic son Lloyd every step of the way from Parliament to Downing Street as part of the End Our Pain march.
She joined the families of 16 other children who have been denied access to the treatment in a bid to lobby parliament on the NHS' tight restrictions to THC-active cannabis oil - which was legalised in November but so far has only been prescribed to one child in four months.
The march even saw Secretary of State for Health Matt Hancock personally address the families about why their children had not been able to access the drug.
Julie told the Chronicle and Echo: "It was a brilliant day. We have raised the profile on how to get the blockers to this treatment unblocked.
"It won't happen immediately. It could take another six months or longer. But we had a great turn out and handed in hundreds of thousands of signatures to Number 10."
For Julie, she wanted to know why her 16-year-old son Lloyd is one of many children turned down from even trying the treatment when it could be the answer they're looking for.
Lloyd is at risk of a life-threatening seizure every hour of the day and must be watched constantly. He takes up to 30 pills a day to manage his epilepsy - and because was born non-verbal and autistic, he cannot even tell his parents and doctors what he's going through.
Julie said: "He's still a child. To have a child on so many drugs is as damaging as having a hundred seizures a day.
"We've got to try. Cannabis oil might not even work for Lloyd. But when will it become an option?"
Cannabis oil available under a NHS prescription has THC as an active ingredient. It is the same substance found in high doses in marijuana and is not available commercially.
But although cannabis oil was legalised in November, it is still unlicensed, meaning it is only available on the NHS is their needs 'can't be met' by all other licensed medicines.