Mother of severely epileptic Kenilworth boy applies to Home Office to allow medical cannabis treatment

The mother of a severely epileptic Kenilworth boy has now submitted an application to the Home Office for a licence to treat him with medical cannabis.

Wednesday, 18th April 2018, 4:20 pm
Updated Wednesday, 18th April 2018, 4:46 pm
Hannah Deacon with Alfie Dingley

Hannah Deacon, mother to six-year-old Alfie Dingley, had several discussions with medical professionals to work out the best course of action after she visited the Houses of Parliament on Tuesday March 20.

After these discussions, the Home Office received the application from Alfie's GP and a neurologist on Monday April 16.

And in response to a question from Labour MP for Manchester Withington Jeff Smith at Prime Minister's Questions today (Wednesday April 18), Theresa May said: "I have written to the family to reiterate our commitment to explore a range of options for finding a solution for Alfie.

A application for a licence has now been submitted to the Home Office which would allow Alfie to use medical cannabis to treat his severe epilepsy

"Of course, we want to ensure that people get the treatment they need. It's also important that medicines are properly and thoroughly tested.

"But I will certainly ensure that the Home Office looks at this application speedily."

Despite the Prime Minister's words and the huge support Alfie has received from politicians and the public, Hannah admitted she is feeling 'extremely anxious' about the application's result.

She said: "We can't guarantee anything, but I really hope we've done everything properly.

A application for a licence has now been submitted to the Home Office which would allow Alfie to use medical cannabis to treat his severe epilepsy

"I would be very distressed if it's not granted. That's why we've got to keep the campaign up.

"It will be quite emotional when we find out. We've worked so hard."

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 has supplemented this treatment with legal cannabis oil, which only contains the chemical CBD as an active ingredient instead of containing the illegal chemical THC.

While this has helped somewhat, Alfie's symptoms are still severe enough to constantly interfere with his schooling.

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.

But to continue the treatment in the UK, a special licence from the Home Office must be granted.

Without this, the family is looking at a bill of around £25,000 a year to treat Alfie in the Netherlands.

Hannah added: "It's a ridiculous amount of money. If that's the situation we're left with that's very disturbing for us as a family.

"I will not allow Alfie to go back to how poorly he was. That's not acceptable for him or for us.

"What we've done from the beginning is fought for him to live."