Epilepsy
Young Epilepsy patients walking for medical cannabis charity
Intractable Epilepsy, a charity that raises money for medical cannabis prescriptions, will hold a walk to raise money for two young epilepsy patients who have seen life-changing results from medical marijuana.
Ben Griffiths, 13, and Murray Gray, 10, both suffer from severe, treatment-resistant epilepsy. This October, they’ll walk from Morecambe Bay in Lancashire to raise funds for private prescription drugs.
Since being prescribed cannabis privately, Ben and Murray have seen life-changing results.
Unfortunately, many families cannot afford the medication, which can cost more than £1,000 per month in some cases.
Karen Gray and Joanne Griffiths the boys’ mothers have been active activists for NHS access since medical cannabis was legalised almost four years ago.
Around 90 children are accessing cannabis privately in the UK, while only three prescriptions have been issued through the health service since then.
As a way to fund private prescriptions until cannabis becomes more readily available on the NHS, Joanne and Karen launched Intractable Epilepsy with the help of other families that have been affected by the condition.
Early this year, the Charity Commission granted it charity status, making it the first independent charity to provide financial assistance to qualifying families with medical cannabis prescriptions.
The four-mile walk on Morecambe Bay promenade, on 29 October, would be impossible for the young epilepsy patients Ben and Murray without medical cannabis.
Young epilepsy patients Ben & Murray
Throughout most of his life, Ben has suffered from seizures, cerebral palsy, and autism. As a result, he experienced as many as 300 seizures per day, some of which lasted for up to 25 minutes at a time.
From conventional anti-epileptic drugs and the ketogenic diet to exploring brain surgery, Joanne and her husband tried every treatment option available.
After just months on medical cannabis, Ben found that his ECG showed no outward electro seizures at all in 40 minutes, twelve months after his December 2018 ECG showed 200 seizures in 18 hours – around 11 seizures an hour.
As a result of taking medical cannabis, Ben has reduced all of his other medications and hasn’t needed any hospital scans or visits to the A&E.
Ben is now happy and inquisitive, can walk without aid, and is able to attend school and play with his siblings perfectly well, all thanks to the private prescription of cannabis oil.
His mother Joanne submitted a cost analysis two years ago showing that it would cost the NHS around £98,000 per year if Ben were to come off his prescription and go back on conventional anti-epileptic drugs.
In addition to suffering hundreds of seizures a day before he started taking whole-plant cannabis oil, Murray had a rare form of epilepsy called Doose Syndrome. His condition left him unable to communicate and required the use of a wheelchair due to dozens of anti-epileptic drugs.
The photos taken of Murray in 2018 are unrecognizable since he hasn’t had seizures for over three years. A wheelchair is no longer necessary for him to attend school and engage with others.
His mother Karen refused the recommendation of RESCAS (the Refractory Epilepsy Specialist Clinical Advisory Service) to put him back on Epidyolex and stop taking medical cannabis, despite the obvious signs of improvement.
Speaking to Cannabis Health Magazine, vice-chair of Intractable, Joanne Griffiths, said supporting young epilepsy families was more vital than ever with the cost-of-living crisis currently facing the UK.
“The cost of living hit families like ours four years ago when we had to find an extra £2,000 per month to pay for private prescribed medication, keeping our son 95 percent seizure free and out of the hospital,” she commented.
“With the current rising UK cost of living, we aim to help other families with their medical costs to keep children and young adults with Intractable Epilepsy safe and well.”
Karen Gray, the charity’s secretary, added: “Both Murray and Ben would not be able to do this without their cannabis oil medication. We are walking to raise funds so that we can help all the families that are paying for this very expensive, yet life-saving medication.”
