MEET MURRAY! The happy, smiling, young man you see before you today is a direct result of his access to a miracle. This miracle? Medical Cannabis. Murray has a rare form of childhood epilepsy called Doose Syndrome which has previously rendered him immobile and hospitalised whilst a treatment was sought. Murray’s parents sourced and pay for medical cannabis from the Netherlands at a cost of £1400 per month due to our own NHS refusing the life changing support. This is where we can make a difference.
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Murray Gray, a young man that nearly lost his childhood.
Murray started having tonic clonic seizures when he was just 2 years old. They multiplied in frequency over the coming years until 2017. This was a turning point for Murray. He suffered 12 TC seizures throughout the year between Jan-Nov, then he had 12 seizures in December alone.
This was when he was diagnosed with Doose syndrome at Edinburgh Sick Children’s Hospital.
Myoclonic atonic epilepsy (MAE), typically known as Doose Syndrome, was first described by Dr. Herman Doose from Germany in 1970. It is an uncommon childhood epilepsy syndrome that accounts for 1 to 2 out of 100 (1 to 2%) of all childhood-onset epilepsies (https://www.epilepsy.com/learn/types-epilepsy-syndromes/myoclonic-atonic-epilepsy-doose-syndrome).
He was immediately prescribed sodium valproate to ‘aid’ his condition. By January 2018 he was having 12 TC’s a day. Murray went from a single prescription to his first cocktail of prescription medication; Clobazam, Keppra and Sodium Valproate.
Murray then went into non convulsive status epilepticus and ended up in HDU after been given a loading dose of a powerful rescue drug called Phenobarbitone. He slept for 3 days and woke up – out of status.
A seizure that lasts longer than 5 minutes, or having more than 1 seizure within a 5 minutes period, without returning to a normal level of consciousness between episodes is called status epilepticus. This is a medical emergency that may lead to permanent brain damage or death (hopkinsmedicine.org).
The Keto Diet, weight gain and a trip to no.10
Murray then started having Myoclonic jerks, drop seizures (atonic) and absences. The response from medical professionals was more drugs. They failed.
During this period Murray was placed on the Keto diet twice as it is believed this can reduce the frequency of seizures in both children and adults, this did not work either. In a desperate plea, Murray was given Ketamine for a week. ‘It didn’t help the seizures and he was just off his face!’ Stated Karen, Murrays mum.
The next phase for Murray’s ‘treatment’ was steroids. Over a 3 month period Murray gained 3 stone. He was just 5 years old at the time.
Following the succession of failed attempts to treat her son, Murray’s mum moved onto a new strategy and started a petition in March 2018. She petitioned to receive medical cannabis through the NHS following her own research into the benefits of cannabis oils. Karen was overcome when she discovered that medicinal cannabis is cultivated here in the UK, yet it is not readily available for those that so desperately need it.
Karen’s petition gained over 240,000 signatures before she personally hand delivered it to No. 10.
A phone call full of hope
In May 2018 Murrays mum had met her wits end. Murray was now in a wheelchair having up to 600 seizures a day. Karen recalled spending this time either constantly in hospital or constantly phoning ambulances. Enough was enough and it was time to once again take drastic action. Karen travelled to Holland to find a doctor who would be willing to prescribe medicinal cannabis oil. Whilst Karen was in Holland she received a phone call from their NHS neurologist who informed her that they had managed to get Murray a prescription for Epidiolex.
Epidiolex is the first prescription CBD medicine on the market and is a CBD isolate. This means it only contains cannabidiol (CBD)
Following her phone call, Karen returned back to the UK empty handed. There was a bit of a process to go through before actually receiving the Epidiolex and in this time Murray and his family had a new challenge to face. Murray had a number of blood tests and it transpired that Murray’s body wasn’t producing red blood cells. Karen asked if this was due to the medication he was on but she was told they had to run more tests and it was possibly due to an infection. Murray then went through general anaesthetics for MRIs and had lumber punctures just to find there were no infections.
Murray went through 5 blood transfusions between June and November 2018. It was then that Murray’s neurologist decided to take him off Sodium Valproate. Shortly after Murray’s red blood cell count normalised.
During this period Murray suffered a drop seizure in hospital where he had to get his head glued. His doctors wanted to wait for the outcome of the red blood cell problem but decided to go ahead with Epidiolex due to increasingly bad seizures.
Epidiolex helped – it reduced the length of his TC seizures and reduced his daytime myoclonics, absences and drops. Murray was able to go back to school in his wheelchair for an hour a day. Unfortunately as a side effect of the Epidiolex he was suffering chronic diarrhoea 5 times a day.
Karen recalled they were willing to put up with it as Murray’s seizures had reduced in frequency thanks to the Epidiolex. Fast forward 4 months, it’s now December 2018 and unfortunately Murray’s seizures returned worse than ever. The Epidiolex wasn’t working anymore. He ended up in hospital in January 2019 in status again.
Karen recalls this unbelievably heart-breaking period: ‘His muscle tone went. He had to be tube fed. This went on until March 2019. He was in a vegetative state, being pumped full of drugs that didn’t help seizures or status. He was out his face. It was upsetting to look at photos of him at that time as we were told it was the epilepsy and drugs that cause his eyes to roll to the top of his head. I know now it was the drugs!’
Bravery, determination and a second trip to the Netherlands
Karen once again flew to Holland with Murray’s medical notes and found a doctor willing to prescribe the Dutch cannabis oils. She collected the prescription from a pharmacy in Den Haag and then came back carrying it through UK customs. An incredibly brave move by a mother willing to do whatever it took to increase the quality of life for her chronically ill son.
Karen started giving it to him in hospital whilst the doctors weaned Murray off Epidiolex. She followed the advice from the Dutch doctor and pharmacist which was the same advice as the U.K. cannabis community – dose up very slowly.
Nothing was happening and Murray was still in status.
‘I knew he needed to get out of status and Bedrolite alone wasn’t going to help’ stated Karen.
Bedrolite is a Dutch prescription medicine which contains CBD with a small proportion of THC.
Murray’s breathing had declined a lot before his mum went to Holland and the neurologists did not want to give him phenobarbitone as he was too weak.
Because high-dose phenobarbitone is sedating, airway protection is an important consideration (https://www.aafp.org).
One brave Doctor (not Murray’s own neurologist) was on call and made the decision to give him phenobarbitone. It worked – it got Murray out of status again. They should have given him this in January stated Karen…
Karen continued giving Murray Bedrolite, increasing dosage by 0.1ml each week. He was getting better! Murray learned to walk again and started eating without the aid of a feeding tube. Murray got to go home and the family were together again under the same roof.
Unfortunately, he then started going downhill again. Karen recalled this period of their ordeal:
‘We were back to hospital for an EEG. It showed he was in status – the same as the EEGs in January and March 2019 – however Murray was walking about the Clinical Directors Office (to his amazement!). We went home and I added in Bedica as I knew from research that he possibly needed more THC. By this point I had been to Holland and illegally brought back the oils 3 times.
Bedica is a medical cannabis prescription that contains a much higher proportion of THC – around 14% of the total volume.
The BBC, a kind soul and a seizure free Murray
During this time the BBC were filming a documentary about what was happening. The programme “can cannabis save my child” was due to be aired in May 2019. I went to Holland and brought back a 3-month supply of the oils before it aired (through fear that I would get stopped at border control once it aired).’
Karen only took part in the programme to highlight the struggles that parents are having getting access to cannabis oils here in the UK.
After the documentary aired an importer in Scotland came forward to help – This meant the cannabis oils were now being given legally and Murray had a home office license through the importer. A HUGE weight had been lifted from Karen and her family.
On the 7th June 2019 Murray’s life changed. This was the day that Murray suffered his last seizure.
As of October 2020 (time of writing) Murray has been taking cannabis oil for 19 months and has been seizure free for 16 months. 16 MONTHS!! He’s no longer in a wheelchair and no longer needs to wear a protective hat. His speech is coming on amazingly, he’s in fulltime education and learning.
‘It’s almost like he has an invisible disability and there is absolutely no doubt this is due to the cannabis oils’ stated Karen.
And this is exactly where we would like to keep Murray! Thank you for reading and thank you for your support. If you haven’t already shared this story then do so using the buttons below and please use this link to shop now and show your support #ForMurray.