Current Affairs

Alfie Dingley, the little boy with epilepsy fighting for his life

Article by Peter Clark April 9, 2018
Alfie Dingley is just six years old and suffers with a rare form of epilepsy

A 6-year-old boy and his family are fighting the UK government in a bid to enable him to live a relatively normal life. Commissioning Editor Peter Clark tells Alfie’s story.

Alfie Dingley suffers from a very rare form of epilepsy in a specific gene called Protocadherin 19, or PCDH19. This results in Alfie having to go through anything between 30 and 150 seizures per month. And there are no ‘good days’. While undergoing treatment in the UK, Alfie endured more than 3,000 seizures and visited hospital on 48 separate occasions. This would be tough enough for an adult, let alone a six-year-old child; one can only imagine the daily anguish of his parents.

Reaching the end of their tether, Alfie’s parents, Hannah Deacon and Drew Dingley, took him to the Netherlands. While medicinal cannabis is not wholeheartedly embraced by all in the Dutch government, the major benefits that cannabis can provide for many chronically ill patients have been recognised. In order to assure the quality and consistency of medicinal cannabis the Dutch government created the Office of Medicinal Cannabis in March 2000.

We just want our little boy back, our happy little six-year-old playing with his sister

 

Following the advice of a paediatric neurologist, Alfie’s parents began treating his condition with cannabis oil. Three drops each day on Alfie’s tongue was all that was required to greatly diminish the number of seizures. Doctors in the Netherlands have advised that continued use of cannabis oil could bring Alfie’s number of seizures down from 30 a day to only 20 a year.

Back to Britain, Back to Seizures

This is where the story should end. Unfortunately, Alfie and his family had to return to Britain due to a lack of funds and the cannabis oil that improved Alfie’s life so radically in Holland is not legally available in this country. The UK government’s current position is that cannabis “is not recognised as having any medicinal purposes”. Here, Alfie is treated with strong steroids that his mother has warned “will cause him to have psychosis, or he will have a heart attack, or his organs will fail and he will die”.

His family were bitterly disappointed. His mother Hannah said: “He’s just a six-year-old boy, he deserves a happy life”. In an interview on TV panel discussion Loose Women, Hannah was asked if she was worried about possible side-effects of the cannabis oil, but she replied “I worry a lot more about the drugs he is on at the moment”. Alfie’s father echoes her worries, commenting that “Alfie’s condition is worsening, which is obviously a worry. The steroids have horrific side effects, they make people more aggressive and we’ve seen a change in his behaviour. We just want our little boy back, our happy little six-year-old playing with his sister.”

Alfie and Patrick Stewart

Alfie’s family hand the petition into Downing Street. ©Patrick Stewart

Alfie and his family, along with actor Sir Patrick Stewart, handed in a petition to 10 Downing Street on 20 March with more than 370,000 signatures and endorsements from celebrities. Stewart, who lives in California and is prescribed cannabis to alleviate his arthritis, has thrown his support behind Alfie’s campaign. He said: “Hearing what his [Alfie’s] life has been and the benefits given to him by being able to use medicinal marijuana. There has never been a stronger case for the legalisation of medical marijuana. How could one not support Alfie?”

The UK Cannabis Market

Currently, the illegal cannabis market in the UK is estimated to be worth £1 billion. And according to a report by the International Narcotics Control Board (INCB), the UK is the largest producer and exporter of ‘legal’ cannabis, which is then used for multiple purposes from medicinal and research to recreational, depending on the laws of the countries that the cannabis is exported to. Clear, a UK cannabis anti-prohibition group, ask the poignant question, “how can the country which sanctions the legitimate production of more medical cannabis than any other in the world deny its own citizens legitimate access?”

Transform, a reform group for drug policy, has criticised the government for mass producing cannabis and yet, “consistently refusing to allow medical cannabis in the UK on the basis that it has ‘no therapeutic value'”. Steve Rolles, Transform’s senior policy analyst, stated: “It is scandalous and untenable for the UK government to maintain that cannabis has no medical uses, at the same time as licensing the world’s biggest government-approved medical cannabis production and export market. UK patients [referring to another young child called Murray] are denied access and suffering unnecessarily, or are forced to buy cannabis from the criminal market.”

The Outcome (So Far)

Unfortunately, the Home Office has so far refused to give Alfie a licence to allow him legal access to the drug. His family met with Prime Minister Theresa May following the petition hand-in, and after their meeting his mother Hannah was optimistic: “The Home Office can’t say if it is a yes or no but we are very reassured after meeting the Prime Minister. I told her about how Alfie had deteriorated since we came back from Holland. She said, ‘We are going to find a resolution for you as quickly as we can.'” One possibility is that Alfie will be offered treatment on the basis of a three-month clinical trial, which Hannah says would be a “lifeline’.

Alfie and his mother Hannah

Alfie and his mother Hannah.

It looks as though there may at last be a positive outcome for Alfie in the near future. However, his family should have been able to use their time and energies to help him enjoy his precious childhood years. Instead, they’ve been forced to spend time arguing a case which has already been proved in countries such as Canada, the Netherlands, Chile, Colombia, Jamaica, United States, Israel and Uruguay.

Alfie’s case – along with plenty of others – demonstrates the desperate need for the UK government to respond positively by implementing a sensible and sympathetic review of the use of cannabis for medicinal purposes.

If you want to support Alfie and his family in their fight to get cannabis oil legally in the UK you can sign the petitions on change.org and 38degrees.org.uk. Additionally, contact your local MP, who can be found here, and see if they give you a straight answer to the question: Do you support Alfie’s fight?

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