Edinburgh mum: ‘Every waking moment I worry about how I will pay for my son’s medication’

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A mum who has battled the government and the NHS to access potentially life-saving drugs for her son has launched a fundraising appeal to help pay for the medicine.

Karen Gray, from East Craigs, was part of the successful campaign to legalise cannabis oil as a treatment for her seven-year-old son Murray who suffers from severe epileptic seizures.

However, after securing a legal supply of oils which included cannabis’ principal psychoactive ingredient, tetrahydrocannabinol (THC), Mrs Gray is now having to find around £1,500 to keep Murray healthy.

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From August last year Murray had been taking a drug which included cannabidiol (CBD), the non-active substance in cannabis, but the positive effects wore off and in January, the young boy was in hospital in a near vegetative state for three months and suffering from constant seizures.

Murray, from East Craigs. Picture: Lisa Ferguson/TSPLMurray, from East Craigs. Picture: Lisa Ferguson/TSPL
Murray, from East Craigs. Picture: Lisa Ferguson/TSPL

Since May, the family has been importing the THC cannabis oil for Murray from Holland despite being forced to do so illegally before gaining a legal supply in July this year.

Murray’s NHS neurologist will not prescribe the drug due to a lack of drug trial evidence of its effectiveness, said Mrs Gray, meaning she is left to pay for the treatment after gaining a prescription from a private doctor.

Current guidelines from the British Paediatric Neurology Association state THC may negatively affect brain development, structure and mental health.

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Desperate for Murray to be kept healthy, Mrs Gray is now constantly worried about how she will afford the drugs.

She said: “Every waking moment from when I wake up to when I go to sleep I am worried about how I am going to pay for his medicine. I have just been so stressed working out how I can afford it, and I hate asking people for money.

“The support we have had from the public is amazing and the generosity from people is brilliant, but none of us should have to do this and fundraise for a child’s medicine when they government should really be sorting this out.

“Nobody should have to break the law and smuggle cannabis oil just to get the medicine for their child. It is just insane.”

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Mrs Gray credits the medicine, Bedrolite, which contains CBD and a small amount of THC, and Bedrocan which is 22 per cent THC, for stopping his seizures and allowing him to live a normal life.

She said: “During the school holidays he has been climbing, swimming and doing all the things we were doing before he got really ill earlier this year. He has been walking with me and going to soft play because he has not been using his wheelchair.”

“Before he was in the hospital and he was off his face on pharmaceutical drugs and they were not even stopping his seizures. The difference in Murray now is unbelievable.

“He has not had a seizure for 68 days, it has just been amazing. He is back at school after the summer holidays from today, now full time in primary three.”

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Alongside the GoFundMe, Mrs Gray added she will continue her fight to get the drugs on the NHS.

She said: “I am still fighting to get it through the NHS because I believe they should be paying for it.

“It has made such a difference to our and Murray’s life and I know other children who don’t have access to the drugs yet, so how will they get the medicine they need?”