Parents of a young woman with a severe form of epilepsy have created a JustGiving page to support her urgent need for medicinal cannabis.
Fallon Levy, 25, whose parents are from Watford, has suffered from Lennox-Gastaut syndrome (LGS), a severe form of epilepsy, since she was four-and-a-half.
The condition causes her to pass out constantly and means she has “hardly any quality of life”, according to her parents, Elaine and Graham.
“Fallon also have learning difficulties – and if she gets excited by anything she’ll literally drop,” said Elaine.
She added: “Over 20 years she’s had every drug available for her and nothing has helped her. Every time we went out, she’d have a seizure and even if we didn’t there would be one every couple of hours.”
When the Levys heard about how young epilepsy sufferer, Alfie Deacon, had successfully been treated with medical cannabis in Holland last year, they decided to travel there themselves. Medical cannabis wasn’t yet available in the UK, so they were paying £1,500 a month to go to Holland.
Elaine said: “We were so desperate to help Fallon. When your daughter is going through something like this, you’ll do anything to help her.”
The results were unprecedented for Fallon, who found that the cannabis made her far less prone to the seizures that had plagued her every day for over 20 years.
The campaign to have medical cannabis legalised was ongoing until November 1, when the government changed the law so doctors on the specialist register of the General Medical Council could prescribe cannabis-based products for medicinal use in the UK.
When Elaine and Graham asked for a prescription, they were told, “Just because a drug has been legalised, doesn’t mean the NHS has to pay for it.”
This means the Levys are still having to pay £1,500 a month to provide Fallon with the only drug that’s ever helped her – but the family simply don’t have the cash to keep making the trip.
Graham said: “We’re starting this fundraiser so that we can keep giving Fallon what she needs for the near future, until we manage to successfully campaign for medical cannabis oil to be available for Fallon and other sufferers like her.”
Graham and Elaine, who are at the forefront of the campaign alongside the End Our Pain group, ideally need to be spending £3,000 a month to provide Fallon with the best medication possible.
To help raise money for Fallon’s medication, go to justgiving.com/crowdfunding/helpforfallon
To support the End Our Pain campaign, go to endourpain.org