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Epilepsy and Medicinal Cannabis Awareness Leading up to Purple Day on 26th March we will be sharing patient stories and real life experiences. Please watch Murray's short film, made by his family. (may contain upsetting scenes of seizures)

Murray started having seizures when he was 2 years old. They gradually became worse and more frequent over the next 3 years. By January 2018 he was having many tonic clonic seizures each day and ended up in non convulsive status epilepticus (in other words he lay in a hospital bed in a vegetative state unable to move, talk or eat). Murray was diagnosed with Doose Syndrome (a rare intractable form of epilepsy). 

Murray was put on many medications over the course of a year that did not help stop the seizures. He was now also suffering from drop seizures, Myoclonic seizures and absences - 100s of seizures every day! 
It was at this point I started to research cannabis oils as a suitable medication.

Murray was put on steroids for 2 months in 2018 - 3 months later he had put on 2 stone in weight. He was 5 years old.  The hospital even tried Ketamine as a rescue drug - which didn’t help. 

Sodium valporate caused a blood disorder. The guidelines for this medication is if any blood disorders occur then this medication should be withdrawn.
Murray had to endure 5 blood transfusions, 2 lumbar punctures, biopsy, MRI and general anaesthetic. As soon as we weaned murray off sodium valporate his blood returned to normal.

Murray was given Epidiolex in August 2018. It did reduce seizure lengths however it caused chronic diahorrea several times a day. He was attending an hour of school a day in his wheelchair. 

I started a petition to access medical cannabis through the NHS. Over 170,000 signatures were added to the petition then I hand delivered it to Downing Street.  The law changed in November 2018 to allow clinicians to prescribe cannabis oils, however no clinicians are willing to do so. 

In March 2019 Murray had been in status for 3 months and was terribly ill as his breathing had started to decline. We thought we were going to lose him. I begged the doctors to prescribe Bedrolite, a dutch cannabis oil that was already being prescribed to two children in the U.K. however the doctors refused. 

I decided to go to Holland and found a Dutch doctor who was willing to prescribe the oil. Over the course of a very stressful 3 months, ‘smuggling the oil illegally into the U.K.” as the NHS wouldn’t prescribe it, Murray started to get better. Fast forward to today, Murray takes Bedrolite and Bedica and he has been seizure free since June 2019. He attends school full time and no longer needs his wheelchair. 

Murray’s mum, Karen Gray is one of the Founders of “Intractable Epilepsy”, a children’s charity set up to fundraise to pay for the high cost of legally prescribed cannabis oils.

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