Kenilworth schoolboy with severe epilepsy closer to getting medical cannabis treatment

Alfie Dingley, 5, suffers from a severe form of epilepsy.
Alfie Dingley, 5, suffers from a severe form of epilepsy.

A Kenilworth schoolboy who suffers from a severe form of epilepsy is a step closer to getting the medical cannabis treatment his family says he needs.

The KWN reported two weeks ago about five-year-old Alfie Dingley’s condition and parents Hannah Deacon and Drew Dingley’s fight to treat him abroad and legalise the treatment in the UK.

Hannah Deacon with Alfie

Hannah Deacon with Alfie

Now a doctor in the Netherlands has spoken to Alfie’s family and has agreed to prescribe him medical cannabis, as long as he comes over to the country to receive it.

But the cost of keeping Alfie in accommodation in the Netherlands as well as insurance means his family cannot take him before raising more money.

Hannah said: “There’s still a big journey for us to go on. The fact that we’ve found a prescribing doctor is fantastic, but this is a beginning.

“I’d have to leave my daughter Annie here if we went to Holland, but if that’s the route we decide to go down then we’ve at least got him a doctor.”

“We’re still trying to fight to get medical cannabis legalised in this country.

“It’s not just Alfie, there’s lots of other children who are suffering.

“In this country we’ve really got to get modern - it’s just ridiculous.”

Alfie 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.

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