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Full-time carer Elaine Levy, 63, sold her family home to continue paying for her daughter Fallon’s medicinal cannabis oil.
Fallon, now 28, has intractable epilepsy – seizures that cannot be managed with pharmaceuticals – and was having 10 seizures a day which left her a “zombie”.
Mum-of-three Elaine, says, “Fallon was in a wheelchair. She couldn’t walk five minutes without having a seizure, dropping to the floor, and smashing her head without warning.
"She couldn’t eat independently, talk, was barely conscious and drooled from the strong drugs doctors tried.”
Elaine and husband Graham, 62, tested every medication possible and Fallon even had surgery twice, but nothing worked until a doctor in Holland prescribed cannabis oil with THC, the psychoactive compound, in 2018.
Within three weeks, Fallon’s seizures had not only drastically reduced in length, but frequency too.
The oil improved her mental capacity, and she was no longer drooling or lying in bed all day recovering from the exhaustion of the seizures.
But the oil came at a whopping cost of £2200 a month.
“We lived life one day at a time, always worrying about getting the money. It was a terrible state.
"We had a child who was not well anyway and then we had to worry about what we’d have to do next get her the oil to keep her as well as could be.
“Graham and I went and sat in the Department of Health in Westminster and demanded a meeting with Matt Hancock but he refused to see us. We were so desperate and angry.”
After running up over £100,000 of credit card debt paying for Fallon’s cannabis oil, Elaine and estate agent husband Graham sold their four-bedroom family home in Hertfordshire and moved into a relative’s small flat to pay for their private prescription.
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“Once your child’s quality of life improves so much, she’s chatting and eating properly again, how can you as a parent say she can’t have it anymore?
"Were we supposed to get Fallon’s wheelchair out again and say there you go?”
The couple have now bought a small two-bed maisonette in Bushey, Hertfordshire, and though it’s not big enough to have their children home, Elaine is relieved to be able to continue paying for Fallon’s medicine.
In the UK, GPs are legally allowed to prescribe the oil on the NHS but so far, only three children have been given it.
Elaine, Graham and a group of parents all affected by the same issue have started the charity Intractable to help other families pay for vital medication because Elaine adds, “We can’t wait for the Government to do the right thing anymore.”
