Murray Gray has only been to school for a total of two weeks since the start of the year due to his condition.
His mother Karen Gray has been doing what she can to home school the youngster in between regular trips to the Royal Hospital for Sick Children in Edinburgh. He receives treatment for a condition that can see Murray have upwards of 12 seizures per day.
His teachers at Clermiston Primary School in Edinburgh suggested applying for additional support so Murray – a P1 pupil – could attend more often. A plan has been put in place that will see staff phone an ambulance right away if he becomes ill. He will now receive much needed one-to-one support after the Easter holidays.
The Scotsman told last month how Mrs Gray was looking to have medicinal cannabis known as Cannabidiol (CBD) made available on the NHS in Scotland.
She has launched a petition that has attracted more than 52,000 signatures, with 100,000 required to trigger a debate at Westminster, where Edinburgh West Lib Dems MP Christine Jardine has raised the issue. Mrs Gray said: “The school have been absolutely brilliant. The headteacher and the deputy head have been fantastic. Murray hasn’t been well enough to go to school, he’s been in hospital having constant seizures.
“He needs one-to-one tuition, it’s not fair on the teacher. It’s hard enough for me to deal with Murray when he’s been like this. So, for his teacher to deal with his condition and teach a class at the same time is impossible, although to be fair his class teacher Miss Barrie has been brilliant.
“Murray gets frustrated that he’s not been at school. His classmates have been learning things that he’s missed out on. He misses not being with his friends at school.
“I took him in to see a show that he was supposed to be in and all his friends were cuddling him and one of the wee girls was crying because she missed him. It was lovely.”
Murray was diagnosed with Myoclonic Astatic Epilepsy at the Royal Hospital for Sick Children in December. He is in and out of hospital and 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 had up 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.
Cannabis oil is readily available and legal to buy.
Mrs Gray added: “I’ve had so many people coming to me offering us medicinal cannabis for free. I could open a shop, but another concern of mine is that everyone appears to be jumping on the bandwagon of selling CBD oil. You don’t know who’s genuine and who’s not. Some of these suppliers are preying on people who are ill and desperate, so I think it’s about time the government stepped in and did something about this.”
Ms Jardine said: “I’m absolutely delighted for Murray that he will be getting this personal support with his education and that so many people are backing his petition.
“But we must make sure that we keep pushing for the government to act to legalise the medication that could make a huge difference to the lives of Murray and so many other people in this country.
“It breaks my heart that so many people are in pain when help could be available to ease their suffering.”