The seizures continued unabated at Great Ormond Street hospital where Fallon was diagnosed with Lennox-Gastaut syndrome (LGS), a rare type of epilepsy whereby sufferers have multiple seizures a day and can experience learning difficulties. Risks include serious head or other injuries from falling. For 20 years, Fallon has had five or more seizures a day.
Normal family life evaporated. Ms Levy had a newborn and older child, but her life became governed by Fallon’s illness as she could never be left alone in case a seizure occurred. Anything could trigger one: hunger, tiredness, feeling hot, feeling cold, excitement, sadness.
Planning family holidays or a visit to a café became fraught operations. The result was that the couple’s lives — and those of their two other children — became increasingly circumscribed.
Over the years they tried a battery of treatments including all available anti-epileptic drugs. Sedatives worked partially but had the side effects of Fallon becoming too dopey to learn or eat.
She had a vagal nerve implant, a pacemaker for the brain, which involves a serious operation, but it had a tiny impact. Social services told the family that Fallon, a cheerful, affectionate woman, “would always be vulnerable and never be able to be left alone—a life sentence really,” said Ms Levy.
A year ago, they turned on the TV news. And saw a miracle. Hannah Deacon, whose son Alfie, also suffered from intractable epilepsy and suffered up to 300 seizures a day, was now seizure-free after taking medicinal cannabis oil, legal in the Netherlands but then illegal in the UK. Ms Deacon was campaigning for it to be made legal here.
The Levys contacted Ms Deacon who, after the publicity, was given a licence by the government to receive the oil legally on the NHS.
At first the Levys tried to get a similar licence, but despite the support of two neurologists it became clear that the only way they could circumvent the red tape was to go the Netherlands and get it prescribed there by a Dutch GP.
Within three months of starting to take the oil, Fallon’s life was transformed. While the family could not afford to give her the full amount — it costs £1,500 a month for even a small dose — the change was breathtaking. Fallon could have a whole day out doing the things she wanted to do — shopping, going to the cinema, taking a walk in the park. She was even able to enjoy food fully, free from the impact of sedatives, and her IQ has improved. For the first time in 20 years, the Levys have been able to lead normal life.
Fallon has fewer than one seizure a week and the Levys believe that if she could have the full dose she would, like Alfie, become totally free of them.
The Levys have joined the campaign led by parents with children with similar conditions — called End our Pain — to have the medicine made available on the NHS. Indeed, they have been told that a decision will soon be made.
Thanks to a major lobbying effort, medical evidence and the support of Watford MPs like Richard Harrington and 100 other MPs, the law has been changed and medical cannabis for intractable epilepsy was made legal on November 1.
However, the cost is a prohibitive £1,500 a month in the Netherlands and £4,000 here — and the Levys’ savings have been exhausted.
Alfie Deacon is the only person to have an NHS prescription, and no others have been given the same dispensation since the law change.
Health Secretary Matt Hancock has said it is likely cannabis oil will eventually be approved on the NHS for a few conditions such as LGS. But this is not likely to happen soon and they are desperate to avoid Fallon having a relapse. “I just can’t bear for her to go back to what her life was like before,” Ms Levy said. “It’s like our whole life is on hold while we wait to see if we can raise the money — and when the government will fund it.”
The Levys have launched a crowdfunding campaign to get Fallon the medicine she needs. They are looking to raise £10,000, which they hope will suffice until the medication is available on the NHS.
“Do I want to have to ask kind strangers to help us?” Ms Levy said. “Of course not… Well, I think any parent would do the same.”
To help Fallon get the medicine she needs, you can donate here.
Sharon Maxwell Magnus is Head of Media and Principal Lecturer in Journalism at the University of Hertfordshire
