REAL LIFE STORIES
An insight into the real life struggles families endure daily, in the hope of giving their children a fighting chance in life.
Only 2 children in the UK have full access to medical grade cannabis, supplied by the NHS.
The rest of the children will not be offered this alternative medicine so in turn will have to continually break the law in the hope of giving their beautiful children a fighting chance at life.
What would you do if it was your child?
KAREN AND MURRAY GRAY
Murray has Doose Syndrome which is a rare form of epilepsy. Anti epilepsy medications never helped his seizures, in fact they only gave him horrendous side effects (one being stopping his red blood cells to work and he had to endure 5 blood transfusions over 4 months in 2018). He was going into status epilepticus and doctors couldn’t help stop this. I found a Dutch doctor and travelled to Holland for an appointment. Came back to the UK (“smuggled”) with cannabis oils then started to gave it to Murray. Started with Cbd based oil first (Little thc) then added in the THC bottle after a few weeks. The difference was outstanding. Murray has been seizure free for 3 years now. He was suffering up to 600 myoclonics and absences every day, and also up to 25 tonic clonic seizures in a 10 hour period during a cluster.
If Karen and Murray's story resonates with you, you can donate to the family by clicking on the donate button.
Joanne Griffiths and Ben's Journey
Ben has suffered 100+ seizures a day for the first 9 years of his life and has tried over eleven conventional combined epilepsy medications and diet, with no success. Ben tried many CBD products in 2016-2017 and we didn’t see much difference to his seizures but it vastly improved his cerebral palsy. So in early 2018 after yet another serious injury due to seizures and going to hospital, a friend had offered some medical grade full extract cannabis oil, which he'd got in a Canadian clinic. When Ben took this oil his seizures reduced to just 6 a day. We asked our sons neurologist if he would apply to the government panel, which he did but the hospital clinical director failed to sign it off, so it was never sent to the panel, so we had no choice but to accepted Epidiolex on compassionate access in October 2018, after we ran out of the Canadian cannabis oil and as Ben was now having many seizures over twenty minutes long. We as a family hoped it would work but it quickly plateaued after 2 months and Ben was sadly back in hospital by December 2018 having 300 tonic seizures a day.
Ben was still refused a whole plant cannabis product by the hospital trust and was in a very desperate state of health, so the family sought advice from a private neurologist on the 5th March 2019. The neurologist said she would talk to the private hospital CEO and pharmacist, and if she could prescribe the medication she would as Ben had no options left.
We finally started Ben on Bedrolite and bedica medical cannabis oils in April 2019. Since then he has weaned off Epidiolex and some epilepsy medication and we continue to wean them slowly due to him being so addicted to them. We have seen Ben have his first ever seizure free days on the cannabis oil, and gain a quality of life he never had on conventional epilepsy medication and diets. We truly have saved his life and hopefully given him a longer healthier life, yet we are still actively fighting for an NHS prescription and still being denied to this present day.
Cayman’s Lifesaving Journey
Cayman, who is now 12 years old, has suffered debilitating life threatening seizures all his life. Cayman has drug resistant epilepsy.
Here is his story, spoken by Caymans mum.
My beautiful boy Cayman is a happy, mischievous 12 year old boy from Macclesfield. Cayman has suffered with severe drug resistant epilepsy all his life and can have anything from 70 - 300 life threatening seizures a day.
In spite of trying all epilepsy drugs he is resistant to them all. He was recently diagnosed with Lennox Gastaut Syndrome in October of last year. On Thursday 24th January I was given an Advanced Care Plan (end of life plan) for my beautiful boy. As a mum I cannot accept this. Full plant Medicinal cannabis is something that hasn’t been tried on Cayman to try and control his seizures and epilepsy encephalopathy. From the 1st November 2018 Medicinal cannabis became legalised but to date no NHS prescriptions have been given.
We currently have a private UK prescription but unfortunately the cost of the medication is between £1000 - £1500 a month and this cost will increase as his dose increases. We are desperately trying to raise funds month by month to keep paying for his Medicinal Cannabis. This is Cayman's only hope to keep him alive !
As Cayman’s mum, I deserve the right to be able to hope and fight for my child. But most importantly, my little boy deserves a right to live.
Mitchell caught Herpes simplex encephalitis virus HSV-1 when he was 5 months old, which left him with severe epilepsy severe autism and learning disabilities to name a few. In 2018 I tried CBD and within 48 hours he was completely seizure free. Since then Mitchell's seizures have gone from over 30 per day/night to around maybe 3 seizures per week.