Alfie Dingley’s mother Hannah Deacon said she felt the Home Office was not using common sense – after Alfie’s symptoms were alleviated by a cannabis treatment in the Netherlands.
The boy’s family took him to the Netherlands in September so he could take cannabis-based medication and his seizures reduced in number and severity.
They lived in a Dutch holiday camp for several months so he could continue having the treatment which they say transformed his life.
On Sunday, the Home Office said the drug ‘cannot be practically prescribed, administered or supplied to the public’, meaning Alfie’s family’s request will not be granted.
Ms Deacon, from Kenilworth in Warwickshire, said: ‘Our neurologist said that if we don’t get him off these prescribed drugs, it can have serious mental health implications for my son.’
Alfie understands a lot more than he can say. He’s traumatized when he has to go to hospital.
He cries and screams. He’s had to be held down by numerous people.
We don’t have ten years to wait for this. Alfie might not be here by the time the drug is approved in this country.
We’re not opening the door to the whole world – there are about nine boys with the same condition as Alfie.
He deserves to have a better quality of life and I will not stop fighting for him. He’s a six-year-old boy, there’s only so much fighting he can do. So it’s up to me, the family, supporters, politicians to help.
I would urge people and politicians to support us and raise this with Amber Rudd to save this little boy’s life. If it strikes a chord with anyone, it would mean so much to us for you to help.
In one year Alfie had 3,000 seizures and 48 trips to the hospital.
With the help of cannabis oil it is estimated his seizures could drop to 20 a year.
A Home Office spokesperson told Metro.co.uk: ‘We recognize that people with chronic pain and debilitating illnesses are looking to alleviate their symptoms.
However, it is important that medicines are thoroughly tested to ensure they meet rigorous standards before being placed on the market, so that doctors and patients are assured of their efficacy, quality and safety.
‘Cannabis is listed as a Schedule 1 drug, as in its raw form it is not recognized in the UK as having any medicinal benefit and is therefore subject to strict control restrictions. This means it cannot be practically prescribed, administered, or supplied to the public in the UK, and can only be used for research under a Home Office license.’
She added: ‘The Home Office would not issue a license to enable the personal consumption of a Schedule 1 drug.’