A mother has made a heart-rending plea for the NHS to give her six-year-old son cannabis to treat his epilepsy.
Alfie Dingley has a rare form of the condition, which causes him to suffer up to 30 fits a day. And although he has been successfully treated abroad with cannabis oil, he cannot be given the drug in Britain because it illegal.
Now his mother Hannah Deacon is calling on the Home Office to make an exception – and has won the support of several MPs
Alfie Dingley has a rare form of epilepsy, which causes him to suffer up to 30 fits a day. And although he has been successfully treated abroad with cannabis oil, he cannot be given the drug in Britain because it illegal
Alfie is the only boy in Britain to have the form of epilepsy known as PCDH19, which is caused by a genetic mutation. His first attack happened when he was just eight months old. By the age of four he was having seizures every three weeks and in 2016 the frequency increased to almost every week, with multiple fits each time.
Ms Deacon said: ‘You get woken up in the middle of the night by a terrible scream. They come in clusters – between 20 and 30 seizures a day for up to five days at a time.’
Doctors treated him with intravenous steroids, but Ms Deacon, a hairdresser, was distressed to see the drugs left Alfie aggressive and at risk of psychosis.
In despair she sought out other treatments and learned about cannabis oil. Ms Deacon, 38, found a doctor in Holland willing to prescribe it, so moved there with Alfie last September. The results were, she says, ‘nothing short of a miracle’, bringing his seizures down to about one a month.
Alfie’s mother Hannah Deacon said: ‘You get woken up in the middle of the night by a terrible scream. They come in clusters – between 20 and 30 seizures a day for up to five days at a time.’
The Dutch doctor said the outcome was ‘astounding’.
But since Alfie and his mother returned to Britain last month after running out of money, he has been unable to continue the treatment.
Ms Deacon, of Kenilworth, Warwickshire, fears that without the cannabis oil her son will return to having hundreds of seizures a month. She said: ‘We have proved this treatment is successful for him. This is a child’s life and health. We need this treatment desperately.’
Baroness Meacher, chair of the All-Party Parliamentary Group for Drugs Reform, said: ‘It is scandalous that a six-year-old boy is prevented from having the medicine that can transform his life.’
Tory MP Crispin Blunt, who advocates for the legalisation of cannabis, added: ‘This position must be reviewed in the UK urgently.’
Salima Budhani from Bindmans Solicitors, which is representing Alfie’s family, says there is legal provision for him to be prescribed cannabis oil, as the Home Secretary can make individual exceptions. She said they would seek a judicial review if Alfie continues to be denied the medication.
The Home Office said last night it would not issue a licence for the personal consumption of a ‘Schedule 1 drug’ such as cannabis.
Ms Deacon is posting updates about her campaign here.