Murray's Family Story

Karen Gray
 

Murray (10) started having seizures when he was 2 years old. Then gradually became worse 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!  I was then told there is very little chance of any more medication helping to reduce the seizures. 

It was at this point I started to research cannabis oils as a suitable medication.

 

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 NHS clinicians (on the specialist register) are willing to do so.  

 

Meanwhile, Murray was put on steroids for 2 months in early 2018 - 3 months later he had put on 2 stone in weight. He was 5 years old.

 

Sodium valporate caused a blood disorder. He 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.  

 

We tried the ketogenic diet - twice. Murray wouldn’t eat anything apart from the keto blueberry muffins I made - then got sick of them! It wasn’t going to work! 

 

Murray was given Epidiolex (CBD isolate provided through the NHS) 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 at this point. We were very grateful at the time that his epilepsy team got Epidiolex for him. We were equally disappointed that it stopped working for him in December 2018 - he ended up back in hospital, in status, a month later! 

 

In March 2019 Murray had been in status for 3 months in hospital and was terribly ill as his breathing had started to decline. We thought that 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, illegally bringing the oil into the U.K, Murray started to get better. Fast forward to today, Murray takes Full Extract Cannabis Oils Bedrolite & Bedica and he has been seizure free since June 2019. He attends school full time and no longer needs his wheelchair. 

Unfortunately however, we have been paying £1,300 each month since 2019. It is a huge strain and burden having to find that kind of money each month. 

 

I feel that the Governments need to change the health policy to allow all our GP’s to prescribe. Murray has been stable for over 3 years. We need our GP to take over the writing of his prescriptions and relieve us of this huge financial strain.