Government refuses medical cannabis to six-year-old epileptic boy who had 3,000 seizures in a year

‘He deserves to have a wonderful life full of joy, not the pain he currently faces,’ say his parents

Members of the all-party parliamentary group on drug policy reform have urged the Government to help Alfie (PA)

A six-year-old boy whose rare form of epilepsy dramatically improved after using cannabis has been denied a request for a medical cannabis licence by the Government.

Alfie Dingley, from Kenilworth in Warwickshire, has a childhood epilepsy (PCDH19) that causes multiple seizures.

He experiences up to 30 fits a day and once had 3,000 seizures and 48 hospital visits in the space of just a year.

The young boy saw his seizures considerably reduce when he travelled to the Netherlands to take a cannabis-based medication prescribed by a paediatric neurologist last September.

It is estimated that with the Dutch cannabis medication Alfie would have about 20 seizures a year.

But the Home Office has denied the family’s request for medical cannabis oil, which remains illegal in the UK.

It said the drug “cannot be practically prescribed, administered or supplied to the public”.

Alfie’s mother, Hannah Deacon, said while her son was abroad he managed to go 24 days without suffering a single attack.

“You’ve got to fight for your kids, I want to know that I’ve done everything I can,” she told the BBC.

“It’s very rare and very aggressive, there are only nine boys in the world with Alfie’s condition,” she added.

“We never imagined how well it would work. He’s just a six-year-old boy, he deserves a happy life. We’ve found something that makes him happy and now we’ve got to take that away.”

She said his cannabis dose was “very small” and he was taking just three drops of the oil. In stark contrast, the volume of steroids he is currently needing to treat his condition can sooner or later lead to organ failure, psychosis and even death, according to Alfie's mother.

Members of the all-party parliamentary group on drug policy reform have urged the Government to help Alfie’s struggle.

Writing on their campaign website Alfie’s Hope, the parents said they were fundraising for their son to go abroad to take the treatment. The family were forced to return home from the Netherlands because they did not have medical insurance in the country.

“We are now campaigning for him to have a chance to use medical cannabis in his own country along with all other children with epilepsy that is unresponsive to pharmaceutical drugs,” they said.

“We are also fundraising to enable us to take Alfie abroad to give him the treatment we believe will help him as it is currently still illegal in this country. We feel unable to wait until the law is changed in the UK.

“We want our baby back, we want to give Alfie the chance of a happy life which he massively deserves. He’s been through more than most go through in a lifetime. He deserves to have a wonderful life full of joy, not the pain he currently faces.”

All of Alfie’s seizures requite hospitalisation and treatment with drugs. He is believed to be the only boy in Britain with the rare PCDH19 form of epilepsy.

“Often, when Alfie has a seizure he stops breathing. Although this rights itself naturally quite quickly, it is very frightening,” reads a statement on the site. “The seconds when he is not breathing can feel like a lifetime. His family live with the fear of their beloved boy dying every week.”

The Home Office said it acknowledged that individuals with chronic pain and debilitating illnesses are “looking to alleviate their symptoms”.

“However, it is important that medicines are thoroughly tested to ensure they meet rigorous standards before being placed on the market, so that doctors and patients are assured of their efficacy, quality and safety,” a spokesperson added.

“Cannabis is listed as a Schedule 1 drug, as in its raw form it is not recognised in the UK as having any medicinal benefit – and is therefore subject to strict control restrictions.

“This means it cannot be practically prescribed, administered or supplied to the public in the UK, and can only be used for research under a Home Office licence. The Home Office would not issue a licence to enable the personal consumption of a Schedule 1 drug.”