Sign up to FREE email alerts from CoventryLive - WarwickshireLive Subscribe Thank you for subscribing See our privacy notice Invalid Email

A Kenilworth family are moving to the Netherlands so they can legally treat their epileptic son with medical cannabis.

Alfie Dingley, five, is believed to be one of only five boys in the world with a rare form of epilepsy that can cause hundreds of seizures a day since he was eight months old.

His parents, 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.

Alfie’s mum 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 well child of his age.

She said: “Alfie is deeply affected by the drugs he is given. 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 medical cannabis in the UK, she could be jailed for up to 14 years.

“This is an absurd situation,” she said.

“We are having to move to a new country to get treatment which could transform Alfie’s life.”

poll loading Should cannabis medicines be legal in the UK? 0+ VOTES SO FAR Yes No

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. The condition usually only affects girls.

Alfie misses out on the majority of his schooling because of his condition. He also has learning difficulties and rarely has the chance to socialise with other children in the Warwickshire town.

“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,” Hannah said.

The couple will be moving to The Hague 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.

Hannah added: “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.”

To donate to their cause, visit their JustGiving page.