A boy whose parents want him to be given cannabis to treat a rare form of epilepsy has been rushed back to hospital for emergency treatment.
Alfie Dingley, aged six, was admitted after suffering from a cluster of seizures, and is being given intravenous steroids, to the distress of his family, who describe him as a ‘beloved son’.
It is the second time he has been hospitalised since returning from Holland last month, where he was being treated with cannabis oil. His condition causes him to suffer up to 30 fits a day, and his parents have been pleading with the Government to let him use the medication, a banned substance in the UK, to help with his symptoms.
‘Beloved’ boy Alfie Dingley has been rushed back to hospital for emergency treatment
Following his hospitalisation, Alfie’s mother Hannah Deacon appealed directly to the Home Office and Prime Minister Theresa May to ‘act to help my beloved son survive and have the best life he can’.
On a Facebook page set up to highlight his plight, ‘Alfie’s Hope’, she said: ‘To see him in distress in hospital with his life in danger yet again is traumatic and heartbreaking. My son is suffering.
‘We need your urgent compassion and action now. Please don’t stand by and let my son suffer or die unnecessarily.’
Ms Deacon, 38, from Kenilworth in Warwickshire, added that the medical cannabis products were the ‘only ones which have worked’ to reduce Alfie’s seizures in number, duration and severity.
‘It’s clear his life is being put at risk by this ridiculous mess that is happening at the moment. I can’t bear to watch my son have seizures. It’s heartbreaking,’ she said in an emotional video.
The Home Office has revealed ministers are exploring ‘every option’ for treating him, including putting him on a medical cannabis trial (pictured with his mother)
Cannabis oil is currently illegal in the UK, despite being available for medical purposes throughout Europe, including in the Netherlands where Alfie and his family spent five months paying for treatment.
Alfie’s seizures, which can number up to 20 or 30 a day, can gradually be controlled in UK hospitals, but over time it is likely he would be institutionalised with psychosis and die prematurely.
The Home Office has previously said it would consider a medical cannabis trial as an option for Alfie.
Ms Deacon has repeatedly urged the Government to grant the youngster a licence to use cannabis oil to soothe his symptoms.
It previously denied his mother’s heart-rending plea, warning the banned substance ‘cannot be prescribed, administered or supplied to the public’.
But the Home Office recently revealed that ministers are exploring ‘every option’ for treating him, including putting him on a medical cannabis trial.
If Ms Deacon were to give Alfie – the only boy in Britain to have PCDH19 – medical cannabis in the UK, she could be jailed for up to 14 years.
While Policing Minister Nick Hurd has met with the family to discuss possible treatments – it has been stressed that no decisions have yet been made.
A Home Office spokesman said: ‘The Government has a huge amount of sympathy for the rare and difficult situation that Alfie and his family are faced with.
‘The Policing Minister wants to explore every option and has met with Alfie’s family to discuss treatments that may be accessible for him.
‘No decisions have been made and any proposal would need to be led by senior clinicians using sufficient and rigorous evidence.’
Mr Hurd previously told MPs that he ‘sympathised deeply’ on a personal level with the situation faced by the family.
It previously denied his mother’s heart-rending plea, warning the banned substance ‘cannot be prescribed, administered or supplied to the public’
Speaking in the Commons, he said: ‘We are aware that the position is shifting in other countries, we monitor that closely.
‘We are also aware that cannabis is an extremely complex substance and the WHO quite rightly are looking at it from every angle.’
It follows the landmark case of Billy Caldwell, an epileptic boy in Castlederg, Northern Ireland, who was prescribed cannabis oil on the NHS last April.
Although Alfie has been successfully treated in the Netherlands with cannabis oil, he cannot be given the drug in Britain because it is illegal.
His family who spent five months in Den Haag, said the medication, prescribed by a paediatric neurologist, reduced his seizures in number, duration and severity.
Members of the all-party parliamentary group on drug policy reform had called on the Home Office to assist with Alfie’s plight.
They said it would reduce his seizures and hospital visits brought on by his condition. It is likely that over time he would be institutionalised with psychosis and die prematurely.
Although Alfie has been successfully treated in the Netherlands with cannabis oil, he cannot be given the drug in Britain because it is illegal
His family who spent five months in Den Haag, said the medication, prescribed by a paediatric neurologist, reduced his seizures in number, duration and severity
Since Alfie (pictured as a baby) and his mother returned to Britain in January after running out of money, he has been unable to continue the treatment
WHAT IS CANNABIS OIL AND IS IT LEGAL IN THE UK?
Government advisers made it legal to buy cannabis oil in 2016
Government advisers made it legal to buy cannabidiol (CBD) oil in 2016 after they admitted that it has a ‘restoring, correcting or modifying’ effect on humans.
However, the oil’s legal status has confused thousands across England and Wales, after the MHRA back-tracked on its position just weeks after.
Suppliers now have to obtain a licence to sell it as a medicine, following the decision in October two years ago – but some weave the strict rules.
Manufacturers are able to avoid regulation by selling it as a food supplement – ignoring the lengthy process of gaining a medicinal licence.
CBD oil, which can reportedly help with back pain, anxiety and epilepsy, has yet to be approved for use on the NHS in Scotland.
It comes in many forms, the most popular being an oil – which users spray under their tongue – or gel tablets which melt slowly in the mouth.
However, cannabis oil – which contains THC, the compound that produces the ‘high, is illegal under UK laws.
But Billy Caldwell, from Castlederg, Northern Ireland, made headlines last April when he became the first Briton to be prescribed it on the NHS.
Cannabis oil, which reportedly has no side effects, influences the release and uptake of ‘feel good’ chemicals such as dopamine and serotonin.
Alfie’s first attack happened when he was just eight months old. By the age of four he was having seizures every three weeks.
Doctors discovered he was just one of just five in the world boys in the world to have the form of epilepsy known as PCDH19, which is caused by a genetic mutation.
And in 2016 the frequency increased to almost every week, with multiple fits each time, Ms Deacon, a hairdresser, revealed in February.
Doctors treated him with intravenous steroids, but Ms Deacon 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 – which contains THC, the compound that causes a ‘high’.
It is different to CBD oil which is legal because it doesn’t contain THC.
Ms Deacon found a doctor in Holland willing to prescribe it, so moved there with Alfie last September.
The results were, she previously said, ‘nothing short of a miracle’, bringing his seizures down to about one a month. The Dutch doctor said the outcome was ‘astounding’.
But since Alfie and his mother returned to Britain in January after running out of money, he has been unable to continue the treatment.
Baroness Meacher, chair of the All-Party Parliamentary Group for Drugs Reform, previously said it was ‘scandalous’ that Alfie couldn’t be given cannabis oil in Britain.
And Tory MP Crispin Blunt, who advocates for the legalisation of cannabis, added: ‘This position must be reviewed in the UK urgently.’
But The Home Office said last month it would not issue a licence for the personal consumption of a ‘Schedule 1 drug’ such as cannabis.
THE LANDMARK CASE OF BILLY CALDWELL
An 11-year-old on the brink of death from a severe form of epilepsy has made an ‘incredible’ recovery since taking medical marijuana.
Billy Caldwell, from Castlederg, Northern Ireland, made headlines in April when he became the first Briton to be prescribed such a drug on the NHS.
But his treatment actually began last November, when he was given cannabis oil by specialists in the US in hope it would control his vicious seizures.
And now, 10 months since he was first given the liquid cannabis oil, he hasn’t had any seizures. He used to suffer up to 100 a day.
Born with intractable epilepsy and learning disabilities, Billy has since cheated death thousands of times, his mother said.
Charlotte told Derry Now: ‘Following extensive treatment with CBD oil, Billy is now more than 300 days seizure free.’
The 49-year-old, who is her son’s full-time carer, also told ITV News earlier this year the change has been ‘incredible, because one seizure can kill him’.
Alfie is the only boy in Britain, and one of just five in the world, to have the form of epilepsy known as PCDH19, which is caused by a genetic mutation
Ms Deacon, 38, from Kenilworth in Warwickshire, said: ‘We are hoping that this is the beginning of the end of our long fight to save our son’