Family fighting to allow epileptic son access to cannabis treatment in UK - The Leamington Observer

Family fighting to allow epileptic son access to cannabis treatment in UK

Laura Kearns 21st Feb, 2018   0

A FAMILY has vowed to fight a home office ruling that cannabis treatment which changed an epileptic youngster’s life will remain illegal in the UK.

Six-year-old Alfie Dingley, from Kenilworth, has a rare form of epilepsy and has suffered thousands of seizures during his young life.

They started when he was just eight-months-old, and Alfie was eventually diagnosed with extremely rare generic disorder called PCDH19. There are only nine boys in the world with the condition, which causes catastrophic clusters of seizures which are unresponsive to anti-epilepsy drugs.

After hearing cannabis oil could help the condition the family moved to Holland last September to access the drugs legally.

The oil has changed Alfie’s life, cutting his seizures down to just one a month.

But the family, including mum Hannah, her partner Drew, Alfie and three-year-old daughter Annie have been forced to move back to their Kenilworth home due to dwindling funds and difficulty getting medical insurance for the youngster.

They appealed to the home office for permission to bring the oil back, but were denied, with the government telling them it was only allowed to be used in research.

Now the all-party parliamentary group (APPG) on drug policy reform have called on the home secretary Amber Rudd to make an exception.

Alfie’s mum Hannah Deacon said: “The treatment has turned him into a different child.

“Our son has been through hell and trauma for years and we have found something that works but have to come home.

“I want Amber Rudd and Jeremy Hunt to hear about my reality watching my son in A&E every week when he is going purple and I’m just hoping he survives.

“If we go back to the way we were my son will die or have psychosis.

“All I am asking for is some compassion and some humanity. Its very sad in this world that it seems a little boy’s life does not matter.”

Hannah is calling on residents to lobby their MP to speak up about Alfie’s plight and says she will not rest until he can receive the treatment in Britain.

But the government remains adamant it will not legally allow the oil to be used.

A spokesman said: “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.

“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.”

Search Alfie’s Hope on facebook to find out more.

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