Karen Gray flew her son Murray, who suffers from myoclonic astatic epilepsy, to Holland on Sunday in a last gasp attempt to get access to cannabidiol saying he could not wait for the UK government to make it available on the NHS.
But the parents’ frustration has turned to joy after Murray’s neurologist back in Edinburgh at the Royal Hospital for Sick Children revealed they can prescribe the P1 pupil at Clermiston Primary School pupil with Epidiolex.
Murray is believed to be the first child in Scotland to be given the drug. Epiodilex is currently not licensed within the UK but it should be available to prescribe by doctors in Britain and the rest of Europe by mid-2019 if the European Medicines Agency approves it early next year.
It is understood Murray’s neurologist has applied for a licence under special circumstances to help him access the drug now for the first time.
Karen, from East Craigs, said: “It is brilliant news as it is something we’ve been waiting a long time for. We have enjoyed our time in Holland but we can’t wait to get home now to see the family and get Murray back to familiar surroundings. Time will tell if it helps but I am positive it will help reduce Murray’s seizures.”
Epidiolex is a purified form of cannabidiol (CBD), one of the hundreds of molecules found in the marijuana plant. It contains less than 0.1 per cent of tetrahydrocannabinol (THC), which makes people high. It is an oral solution with a strawberry flavour that is taken twice a day.
Karen and Murray are flying home today ahead of tomorrow’s trip to the Sick Kids to wean the youngster off his current medication before starting with the Epidiolex.
Karen said: “We came to Holland in order to get Bedrolite, but it seems that it wasn’t going to be possible. My husband spoke to the neurologist back home who said they will prescribe Epidiolex which is fantastic.
“We will give it three months to see what impact it has. If it doesn’t work we will be back to square one. But it also gives the government more time to act.
“I’d like to thank everyone for donating and signing the petition. We have now got medical cannabis and it gives hope to many other children in the UK.”
Edinburgh West MP Christine Jardine said: “I am absolutely delighted for Murray. It is important that he is now going to have access to treatment which will get him back to school and live a life we all want him to have.
“But the campaign to make medical cannabis on the NHS will continue. It is vital that we follow through on this so people who can benefit from the cannabis can get the treatment they need.”
An NHS Lothian spokesperson said: “We do not discuss individual patients”.