A DESPERATE mum says she has lined up medical cannabis to treat her son’s epilepsy and will “definitely” give it to him if she doesn’t hear back from health secretary Shona Robison whom she met with earlier this month.
Karen Gray, from East Craigs, discussed the possibility of her five-year-old son Murray being given Epidiolex, which is made by UK company GW Pharmaceuticals and is pure Cannabidiol (CBD) used to treat the illness in children.
The youngster, who is a P1 pupil at Clermiston Primary School, has been in and out of the Royal Hospital for Sick Children since he was diagnosed with Myoclonic Astatic Epilepsy aged two and receives treatment there for upwards of 12 crippling seizures a day.
Karen, who has two other children, handed in a 170,000 signature petition to Downing Street last month in a bid to trigger a parliamentary debate that would see the drug made available on the NHS.
She told the Evening News that a lack of action could see her take matters into her own hands and administer medical cannabis, that has been bought online, to Murray.
Karen said: “I’m really close to doing that if things don’t move quickly – I haven’t given up on that idea.
“I can get cannabis oil here and it’s something I’m definitely contemplating. Shona Robison told me that she was going to try and get Epidiolex for Murray on compassionate grounds. I haven’t heard anything back from her or the Scottish Government yet but they were really good and had obviously done their research.
“There’s a cannabinoid medicine created by a company called GW Pharmaceuticals that is given to kids with epilepsy – so I’m hoping Murray can get that. They’ve done trials and it’s proved to be successful in reducing child epilepsy seizures and the Federal Drugs Agency are looking at approving Epidiolex for use in the States.”
Karen said that despite everything he’s been through Murray continues to be a “happy wee soul” who just gets on with things as best he can.
She added: “We went to sports day, so he could see his friends and his big brother and his teacher and he was delighted. A wee girl gave him a big cuddle which was lovely – but he had a seizure there as well.”
Scottish Lib Dems health spokesperson Alex Cole-Hamilton said it was “tragic” that Karen had to wait so long to get help.
He added: “Karen Gray has fought a tireless and lengthy battle to highlight the plight of those who suffer with epilepsy and chronic pain.
“Any parent would want to make sure their child’s life is as pain-free as possible, and it’s heartbreaking that under the laws currently in place, the NHS is not able to support patients who would benefit from the use of CBD oil.”