The mother of a six-year-old boy with epilepsy has spoken of the difference cannabis oil has made to his life and that of his family, saying she feared he would have to go into a home without it.
Hannah Deacon said conventional steroid treatment made Alfie Dingley violent towards her and his sister Annie, three, and she worried she would not be able to control him as he got older.
Ms Deacon has spent £30,000 on the “miracle” tetrahydrocannabinol (THC) treatment for her son – who also has other learning and speech difficulties – legally in the Netherlands.
The result, she said, had been a reduction in seizures from 300 or more a month, often requiring an emergency dash to hospital, to just one.
It's madness to think that people should be suffering when there is something that could help them
She told the Press Association: “When he used to have intravenous steroids he used to beat her (Annie) up, he would beat me up, I couldn’t leave them in the room on their own together because he would be very, very aggressive.
“My partner is six foot three, when he (Alfie) is 15 he will be six foot three. I was sitting there thinking ‘if he is that aggressive because of steroids, he would have to go into a home’. There would be no way I could look after him.
“That is not something I would allow to happen, I need to keep him safe, I need to look after him.
“This medication has taken him from violence, aggressive having lots of seizures, to not being like that, that is a miracle for him and for us. It’s amazing.”
Ms Deacon said she turned to cannabis after being warned by doctors that her son would suffer a heart attack or psychosis if they carried on treating him with intravenous steroids.
However, they were forced to return to their Kenilworth home from the Netherlands after they ran out of money.
In March, Ms Deacon met Mrs May in Downing Street and she promised to help. But it was not until Tuesday, following the case of fellow epilepsy sufferer Billy Caldwell 12, that the Home Office granted a licence for Alfie to receive the treatment here.
Ms Deacon said she hoped the process of attempting to get a licence becomes easier for families, saying people were frightened of the word cannabis.
She said the attempt to get the licence had been more akin to a pharmaceutical trial application than a family trying to get help for their son, adding: “There are lots and lots of families up and down this country who are suffering with children with severe epilepsy where medication and diet doesn’t work.
“I’m not saying that it (cannabis) should be the first line of medication – there are other protocols to try.
“But if those protocols don’t work then medical cannabis surely, for the severely ill children, should be made available.
“It is just madness to think that people should be suffering like they are when there is something that could help them.”
She also called for steps to be taken to boost research into cannabis-based medicines, saying that the current rules on the drug made it difficult.
She said: “Hopefully we will have a more forward-thinking way of doing things in this country and medicinal cannabis will hopefully, in five or 10 years’ time, be the norm.
“That is what I would want, because I would not want any other child to go through what my son has.”