Video report by ITV News Correspondent Daniel Hewitt
When the law changed on medical cannabis in November last year, families relying on it rejoiced, assuming their struggle to obtain the drug would be over.
The vast majority of those families were wrong - less than 100 people have received NHS prescriptions for medical cannabis - meaning many have been forced to pay thousands to access the medicine privately.
One family who had their hopes raised with the promise of medical cannabis are the Levys.
Elaine Levy heard about the case of Alfie Dingley - a young boy whose seizures were severely reduced after taking medical cannabis - and decided to see if the treatment would work for daughter Fallon, who has severe epilepsy.
She says the drug gave Fallon "her life back" and described "raising a glass of Champagne" when she heard about the law change that would allow her to access cannabis legally and cheaply.
Unfortunately, Fallon is not one of the lucky recipients of an NHS prescription and her family pays thousands of pounds every month to access the medicine privately.
Before having access to medical cannabis, Fallon, 25, suffered up to 15 epileptic seizures a day.
Now, Elaine says, "she can walk, she can talk, her intelligence has gone up hugely, she has proper conversations".
"What price can you put on that?" she asks.
But without an NHS prescription, the price is rather high - she pays around £2500 every month and was forced to remortgage her house to afford it.
She says she'll do "whatever it takes" to keep her daughter well, but doesn't know how long she will be able to afford the drugs for.
Without cannabis, Elaine says Fallon would be forced to "go back to the wheelchair" and start taking "clobazam valium type drugs, where you can't eat properly and you're doped up".
"Well as a parent, who would do that?" she asks.
The Levys are also crowdfunding "to help Fallon get the medicine she needs".