A mother whose six-year-old son suffers from a rare form of epilepsy is campaigning for him to have access to cannabis oil in the UK to ease his chronic seizures.
Hannah Deacon, 38, from Kenilworth in Warwickshire, appeared on Tuesday’s Loose Women where she explained that her son Alfie Dingley is the only boy in Britain to suffer from the condition known as PCDH19.
As medical cannabis oil is a banned substance in the UK, Hannah raised funds to travel to the Netherlands, where it is legal, so that her son could benefit from the controversial treatment.
Hannah says she saw an immediate improvement in Alfie – reducing his some 30 seizures a day down to one a month.
The mother admits that she isn’t worried about side effects and is more concerned about the steroids that Alfie is currently prescribed by the NHS.
‘I worry a lot more about the drugs he’s on at the moment that could kill him and make him psychotic than three drops of THC,’ she said of the compound in cannabis oil that produces the high and makes it illegal in the UK.
Hannah spoke of the potential side effects from steroids, saying that there is ‘no clinical data because you can’t do an ethical trial of children’ and the doctors work on an anecdotal basis.
‘The side effects are organ failure, psychosis, heart attacks and death basically,’ she explained as well as mentioning Alfie was on Phenobarbital ‘which makes you very aggressive’.
CBD oil, which can reportedly help with back pain, anxiety and epilepsy, has yet to be approved for use on the NHS in Scotland.
It comes in many forms, the most popular being oil – which users spray under their tongue – or gel tablets which melt slowly in the mouth.
However, cannabis oil – which contains THC, the compound that produces the ‘high, is illegal under UK laws.
If Hannah were to give Alfie medical cannabis in the UK, she could be jailed for up to 14 years.
Of travelling to the Netherlands Hannah said: ‘I didn’t want to go with the support of doctors from the UK and he said we had no choice.
‘He knew there was nothing else that could be done other than steroids and that they would eventually do very bad damage to him.’
Alfie’s first attack happened when he was just eight months old. By the age of four he was having seizures every three weeks.
Doctors discovered he was just one of just five in the world boys in the world to have the form of epilepsy known as PCDH19, which is caused by a genetic mutation.
And in 2016 the frequency increased to almost every week, with multiple fits each time, Hannah, a hairdresser, revealed in February.
Doctors treated him with intravenous steroids, but Hannah was distressed to see the drugs left Alfie aggressive and at risk of psychosis.
In despair she sought out other treatments and learned about cannabis oil – which contains THC, the compound that causes a ‘high’.
It is different to CBD oil which is legal because it doesn’t contain THC.
Hannah found a doctor in Holland willing to prescribe it, so moved there with Alfie last September.
The results were, she previously said, ‘nothing short of a miracle’, bringing his seizures down to about one a month. The Dutch doctor said the outcome was ‘astounding’.
But since Alfie and his mother returned to Britain in January after running out of money, he has been unable to continue the treatment.
The Home Office has revealed ministers are exploring ‘every option’ for treating Alfie, including putting him on a medical cannabis trial.
But Policing Minister Nick Hurd has since met with the family to discuss possible treatments – but stressed no decisions have yet been made.