The mother of a desperately ill woman had to sell her home to pay for her daughter’s “life changing” medical cannabis.
Elaine Levy, from Bushey, said she and her husband Graham are unable to afford the around £2,500 monthly bill for the drug which drastically reduces their daughter’s severe epileptic seizures.
Fallon, aged 27, has a rare form of epilepsy known as Lennox-Gastaut syndrome which, if untreated, leaves her suffering with around 200 seizures a month.
Her current medical cannabis oil, Bedrolite, reduces the seizures to around five per month, granting her greater independence, increased speech and meaning she no longer needs a wheelchair.
But after discovering the benefits of the medical drug, the family had to continuously pay for the treatment themselves – as it is not available under the NHS.
The monthly costs eventually got to the stage where the family could not afford the drug anymore.
Mrs Levy said: “Once I started this journey and saw the effects on my daughter there was no going back.
“We had to start finding the money ourselves, each and every month, £2,500.
“Eventually we got to the stage where we couldn’t afford it.
“I made the decision a year ago to sell my home so I could take money out of there and keep it separate so I have a pot to keep paying for Fallon.”
While selling their house has helped to fund the treatment, it is not a long term and sustainable form to finance it.
The mother continued: “That money isn’t going to last forever, so I need Boris Johnson to give us the NHS prescription so we can have a normal life.
“At the moment I don’t sleep at night and I don’t know what I’m going to do each month – I just can’t carry on.”
The parents were outside Downing Street today (March 26) in a campaign to draw attention to their daughter’s situation.
It is believed that around 100 other young people would also benefit from the situation if the treatment was made available on the NHS.
“It needs to happen today. The money will run out this year,” the mother said. “I can’t envisage what it would be like when I literally don’t have a penny left and Fallon is ending up in hospital, having to take the wheelchair out again.”
She concluded: “Will it take a child to die before Boris Johnson gives us prescriptions?
“If I had the opportunity to look the Prime Minister in the eyes, I would say: ‘Please Mr Johnson, you have children like I do, please help as a father and me as a mum, to keep my daughter well.”
MP Sir Mike Penning raised the issue in the Commons earlier this week, urging the Prime Minister to “do everything possible” to ensure parents do not have to “beg and borrow from their families and remortgage their homes” to afford medicinal cannabis and that lives are not lost.
Mr Johnson vowed to “resolve the issue” with the help of the Department of Health and Social Care.