A Kenilworth schoolboy who suffers from a severe form of epilepsy is finally off to the Netherlands to receive medical cannabis treatment after months of campaigning.
Five-year-old Alfie Dingley will head to The Hague next week with his mother Hannah Deacon, his father Drew, and three-year-old sister Annie to be treated legally with medical cannabis oil. Such treatment is currently illegal in the UK.
But the family have now found a doctor and pharmacy, contacted and briefed a children’s department of a hospital’s A&E department, and paid for two months of accommodation in the Dutch city.
Hannah said: “It’s been very traumatic couple of years for us as a family. We are having to move to a new country to get treatment which could transform Alfie’s life.
“We are willing to do absolutely anything it takes for him to be well.”
Alfie, a pupil at Thorns Community Infant School, has a rare form of epilepsy called PCDH19, which causes him to suffer intense ‘clusters’ of seizures.
He started having the seizures at eight months old, but he was not formally diagnosed with the condition until 2015. The only thing that briefly stops his seizures is steroids, but these can have serious side effects.
The toll the treatment takes on Alfie meant the family looked to medical cannabis as a solution. It is hoped the drug can reduce the severity of Alfie’s seizures, and maybe stop them altogether.
Hannah said: “Alfie is deeply affected by the drugs he is given. The steroids have serious side effects, are toxic, and cause him to be very aggressive. His condition means he misses 75 per cent of his schooling, and that he does not get to socialise, as well as having learning difficulties.
“We have done a lot of research into whole plant medical cannabis and have found many parents around the world who are using it effectively to either reduce or stop very aggressive seizures.
“However, if we were to give Alfie medical cannabis in the UK, we could be jailed for up to 14 years for supply. This is an absurd situation.”
The House of Lords debated the legality of medical cannabis in the UK yesterday (Thursday September 7).
Baroness Meacher led a debate calling on the Government to reclassify cannabis.
In her speech, she said: “Under our drug schedules, cannabis is a dangerous drug with no medicinal value.
“In reality cannabis is, of course, safer than many prescribed medications and there is a growing body of evidence of its medicinal value for a remarkable list of conditions. Our schedule is simply wrong.”
“Chronically sick patients with constant severe pain and other symptoms have suffered far too long, reliant upon prescribed medications, sometimes ineffective and with intolerable side effects for many.”
Anyone wishing to keep informed on Alfie’s progress should visit the Alfie’s Hope Facebook page. Donations can be made at his Just Giving page, and their petition to legalise medical cannabis in the UK is here