Medical cannabis trial could offer hope to Kenilworth boy with rare form of epilepsy - The Rugby Observer

Medical cannabis trial could offer hope to Kenilworth boy with rare form of epilepsy

A MEDICAL cannabis trial could be the solution to treat a Kenilworth boy with a rare form of epilepsy say Home Office ministers.

The family of six-year-old Alfie Dingley moved to Holland in September so the youngster could legally take cannabis oil to soothe the symptoms of a generic disorder called PCDH19.

There are only nine boys in the world with the condition, which causes catastrophic clusters of seizures which do not respond to anti-epilepsy drugs.

And the oil has ‘dramatically’ changed Alfie’s life – cutting his seizures down from up to 30 a day to one a month.

But after being forced to move back to Kenilworth due to dwindling funds and difficulty getting medical insurance, they have been urging the government to grant him a licence to use cannabis oil.

The request was denied by the Home Office, but policing minister Nick Hurd has since met the family to discuss alternatives.

One option could be a medical trial led by Alfie’s doctors.

His mum Hannah told the Observer: “We are assured it was a sincere offer but we need to stress the importance of making sure the trial goes ahead quickly so Alfie is safe.

“We hope that together we can ensure the trial is put in place swiftly.

“I’m tired of seeing my son suffer. It is his human right to be well and this makes him well.”

A Home Office spokeswoman stressed no decision had yet been made but said ‘every option’ was being looked at.

She said: “The government has a huge amount of sympathy for the rare and difficult situation that Alfie and his family are faced with.

“The policing minister wants to explore every option and has met with Alfie’s family to discuss treatments that may be accessible for him.

“No decisions have been made and any proposal would need to be led by senior clinicians using sufficient and rigorous evidence.”

Search ‘Alfie’s Hope’ on Facebook to find out more.

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