My name is Karen Gray, and my son has Doose Syndrome (intractable epilepsy).
Murray started having seizures when he was 2 years old. They 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 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.
In March 2018 I started a petition to access medical cannabis through the NHS. Over 200,000 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 due to no clinical trials taking place in the U.K.
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 (illegally bringing cannabis oil into the U.K., Murray started to get better. Fast forward to today, Murray takes Bedrolite and Bedica (added THC) and he has been seizure free since June 2019.
Cannabis oils are now available privately which cost a lot of money. Many of us fundraise to be able to pay the vast cost each month. This is why we have set up the charity “Intractable”. We want to be able to help fund the costs of these life saving cannabis oils.