24th Jun, 2019

Cannabis medication stops working for epileptic youngster and new strain to help could take weeks to get hold of

Laura Kearns 16th May, 2019

CANNABIS medication which helped bring a Kenilworth youngster’s epilepsy under control has stopped working – and fears have been raised additional strains which could help may take weeks to get hold of.

Alfie Dingley was the first person in the country to be granted a licence for the drug last June.

But the eight-year-old has grown used to the strain of the treatment, something mum Hannah says is common and needs to be substituted with a new strain or by adding alternatives.

She now fears it could be weeks before he receives the medication due to strict UK laws which make it difficult to access cannabis-derived treatments.

Mum-of-two Hannah said: “His body is getting used to this strain of cannabis and we need to try something else. I’m working hard but it’s really difficult to get other products into the UK and I’m really angry about that because my little boy is being put at risk because of bureaucracy.

“What we need to understand in this country is that cannabis is amazing but you need to know how to use it. You need to strain swap and add things in. It’s not a miracle cure, you need to know how to use it, which I do, but am not able to in this country due to of lack of available products.”

Alfie has a rare form of epilepsy which affects just nine children in the world. It can cause up to 30 seizures a day or ‘catastrophic clusters of seizures’ which are unresponsive to anti-epilepsy drugs.

But when taking the Bedrocan strain of cannabis oil his seizures dropped to as few as one a month.

Hannah says making changes to her son’s medication will all have to be approved through a new licence and then be imported.

She said: “I don’t want my child to wait for weeks and go through more clusters because we haven’t got the right medication in this country. He’s slowly getting worse.

“We’ve put the dose up but its not working. I’m looking for anyone to help us urgently because I can’t watch my family crumble again.

“I am so angry because my child is suffering and I can’t help him. I will carry on trying my best because nothing else works, we have tried everything.”

Hannah runs a Facebook group called ‘Alfie’s Hope’ keeping supporters updated with her son’s progress and raising awareness about those who need cannabis treatment.

Following her long battle for Alfie’s licence, she was invited to join an the all-party group of MPs to encourage the legalisation of medicinal cannabis. She also created the pressure group known as ‘End our Pain’.

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