Petition to treat severely epileptic Kenilworth boy with medical cannabis to be handed to Parliament

A petition demanding a severely epileptic Kenilworth boy gets medical cannabis treatment will be delivered to Parliament by his mother next week.

Wednesday, 14th March 2018, 4:25 pm
Updated Wednesday, 14th March 2018, 4:30 pm
Alfie Dingley, 6, suffers from a severe and rare form of epilepsy

Hannah Deacon, mother to six-year-old Alfie Dingley, will present the petition to Parliament on Tuesday March 20. It currently has more than 370,000 signatures.

She hopes the petition will increase the pressure on the Home Office to give Alfie a licence for his severe epilepsy be treated with medical cannabis.

Hannah said: "I think it will be a pivotal day for us.

Hannah Deacon with her son Alfie

"We're going to keep fighting. There's a stupid amount of red tape that's been put in front of us by our government - it's unacceptable."

Alfie suffers from a very rare form of epilepsy known as PCDH19, which causes him to suffer intense 'clusters' of seizures.

He is currently treated with strong steroids, which can have serious side effects as they are only intended to be used by adults.

Hannah said an earlier course of medical cannabis treatment in the Netherlands had worked brilliantly for Alfie, dramatically reducing the intensity and frequency of his seizures.

Hannah Deacon with her son Alfie

After being forced to return to Kenilworth in February because of the €4,000 a month costs, Hannah wanted to continue the treatment in the UK, which is currently illegal without a special licence from the Home Office.

And after pressure from media coverage and lobbying from Alfie's MP Jeremy Wright, Nick Hurd MP from the Home Office met Hannah at the beginning of March.

He explained Alfie would need a three month trial of the cannabis treatment before the Home Office would grant a licence.

Although Hannah said this was better than her previous situation, she was still very frustrated as she felt Alfie's treatment in the Netherlands provided more than enough evidence to show it worked.

She added: "They (the Home Office) won't accept that, which is madness. They are putting a huge amount of stuff in our way. It's very, very frustrating.

"If we carry on treating him with steroids, Alfie could die. That's the reality. We're already seeing horrible changes in his mood.

"We will go to court if we have to. If they don't hurry up that's what we'll do. We will not stop campaigning until we get this licence."

Alfie's story has touched a chord with many. Celebrities such as Richard Branson and Joanna Lumley have called on the government to do more to help him.

In a previous statement, a Home Office spokesman said: "The Government has a huge amount of sympathy for the rare and difficult situation that Alfie and his family are faced with.

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

Anyone wishing to sign the petition can do so here