Ben Griffiths is an 11 year old boy from Preston, Lancashire, UK. He is Autistic. He has cerebral palsy. He also suffers from brain damage. At worst, he can have up to 300 seizures per day. Going into hospital upsets him.
He is on Bendrolite and Bedica Cannabis oils to control and treat his seizures and keep him alive and in better health. However, he only has six weeks' supplies left due to the supplies from the Netherlands running dry after Britain left the EU singles market and customs union. Due to politics and the law, this much-loved and deserving little boy could die.
He has had his first seziure-free days due to the medication. He now typically has no more than five fits in a day. However, without his Bendrolite and Bedica Cannabis oils, he would be having hundreds of seizures each day and having to go to hospital more often, and he wouldn't survive, all due to a legal issue.
His mother has said, "Ben's life has been changed by Bedrolite and Bedica. He's happy, he goes to a special school and he's starting learning, teachers say he's making progress, and he seems happy. He loves life now, he loves being outside, swimming, going on his trampoline.
He doesn't like the hospital, he gets upset going there. When he is having so many seizures, you can see him giving up. If we run out of the oils he will have to go into Intensive Care at Alder Hey.
"He will start having hundreds of seizures again, and the reality is, sadly, he just won't survive. So my message is for the Government to please make sure this doesn't happen. It is so, so upsetting because this is avoidable. It is completely preventable."
Louise Cousins, director of external affairs at Epilepsy Action, has said "For Ben and others who have seen significant reductions in seizures and improvements in quality of life while using these particular cannabis-based medicines, the thought of having to switch products or to go without them entirely is very concerning.
"Severe epilepsies are often resistant to existing treatments and families will have tried numerous other medications to control seizures. It is not always as simple as switching to a different cannabis-based medicine or a different treatment. There are risks attached to this.
"This is yet another worry for these families on top of the years of battling for access to these treatments on the NHS and caring for a loved one with severe epilepsy.
"We urge the Health Secretary to deliver on his commitment to finding an urgent solution and ensure that those who are currently benefitting from these products can continue to access them."
Please save this boy's life, and the lives of others like him!