The family of an epileptic boy who suffers hundreds of seizures a day are quitting the UK to move to the Netherlands so they can legally treat him with medical cannabis .
The parents of five-year-old Alfie Dingley – who is believed to be one of only five boys in the world with his rare form of epilepsy – say the UK’s drug laws are “absurd”.
Hannah Deacon and Drew Dingley want to treat the hard-to-control seizures with medical cannabis oil, but could be jailed if they do so in their Warwickshire home.
Hannah, who previously worked in the travel industry but is now her son’s full-time carer, said his life is very different to a healthy child of his age.
Hannah said: “Alfie is deeply affected by the drugs he is given.
Alfie’s family are saving to move across the North Sea to the Netherlands (Image: Coventry Telegraph/BPM MEDIA).
Alfie with his dad Drew (Image: Coventry Telegraph/BPM MEDIA)
“The IV steroids Alfie takes when he has a cluster of seizures have serious side effects. They are toxic and cause him to be very aggressive.
“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.”
If Hannah were to give Alfie – who was diagnosed at eight months old – medical cannabis in the UK, she could be jailed for up to 14 years.
Alfie’s illness has robbed him of a normal childhood (Image: Coventry Telegraph/BPM MEDIA).
Alfie has been treated at Great Ormond Street (Image: Coventry Telegraph/BPM MEDIA)
Hannah said: “This is an absurd situation. We are having to move to a new country to get treatment which could transform Alfie’s life.”
Alfie spent four months at Great Ormond Street Hospital when he was younger and was diagnosed with PCDH19, an extremely rare genetic disorder, at the age of four.
Alfie with sister Annie, three (Image: Coventry Telegraph/BPM MEDIA).Alfie’s dad Drew and mum want to take their son to Holland (Image: Coventry Telegraph/BPM MEDIA)
He also has learning difficulties and rarely has the chance to socialise with other children in his hometown of Kenilworth.
The couple will be moving to Den Haag with Alfie and their three-year-old daughter Annie next week.
They are asking for donations to help fund their move and have so far raised almost £2,000 of their £15,000 target.
The youngster’s family want to treat him with cannabis oil (Image: Coventry Telegraph/BPM MEDIA)
Hannah said: “It’s been very traumatic couple of years for us as a family, but we are willing to do absolutely anything it takes for him to be well.
“We now have to raise enough money to take Alfie abroad so we can try this life saving medicine with him, in the hope that it gives him the chance of a normal and happy life.”
credit:420intel.com