Karen Gray from East Craigs, has launched a petition for Cannabidiol (CBD) oil to be prescribed to her son Murray in the hope it will to reduce the “nightmare” seizures that the brave youngster has to endure.
She told the Evening News: “People who are supplying the CBD oil are saving lives and surely that’s a job for the NHS.”
Murray was diagnosed with Myoclonic Astatic Epilepsy (MAE) at the Royal Hospital for Sick Children in December after suffering 12 seizures in one month. He is currently in hospital where he is taking five different types of medicine, including steroids, which doctors believe may control his spasms.
The case is similar to that of Alfie Dingley, six, from Kenilworth, Warwickshire, who has 20 to 30 seizures a day. His family are campaigning to have cannabis oil made available for medical purposes and Home Office ministers are looking at the possibility of a drug trial to help him.
Karen said: “Murray’s been having chronic seizures since has was two years old, but only about three a year at that time. He lies down and starts to shake. Then last year they started to get a lot worse – he had six of them up until December and then he had 12 that month.
“It’s an absolute stress but you’ve got to stay calm. It’s a nightmare just watching him, you can’t do anything and you feel totally helpless.”
Karen said her son, who is a P1 at Clermiston Primary School, has only been able to attend for three weeks since starting and is missing out on his education and time with his friends. She is unable to look after him at home due to the severity of his condition.
Murray also gets frustrated at not being able to feed himself. Karen said: “If he’s trying to hold a spoon of food up to his mouth, it goes everywhere, so I’ve got to hold it for him. He wants to do it himself, he’s very independent ... but I’ve got to hold the spoon because he’s constantly twitching and shaking with the seizures.”
Cannabis oil is readily available and legal to buy, but having spoken with her doctor Karen realised she would need a medical professional to help with things like dosage.
She added: “I mentioned it to my doctor and they have done trials on epileptic syndromes and it was shown to help.
“My doctor said because it’s not licensed the NHS can’t use it, and I was warned that if I just go to a supplier and buy some, we wouldn’t know if it’s going to be the same strength each week. It could be far too strong or far too weak.”
Local MSP Alex-Cole Hamilton said: “There is a huge volume of mainstream medical and scientific evidence that shows medical cannabis has helped stop the daily aggressive seizures that children with this syndrome have.
“It’s heartbreaking that under the current laws in place, the NHS is not able to support patients who would benefit from the use of CBD oil.”