Family of severely epileptic Kenilworth schoolboy raising money for him to get cannabis treatment abroad

The family of a severely epileptic five-year-old Kenilworth schoolboy are trying to raise £25,000 for him to receive medical cannabis treatment overseas.

Wednesday, 25th January 2017, 5:41 pm
Updated Thursday, 26th January 2017, 8:13 am
Alfie Deacon, 5, suffers from a severe form of epilepsy.

Alfie Dingley, the son of Hannah Deacon and Drew Dingley, suffers from a rare genetic disorder called PCDH19, which causes him to suffer intense ‘clusters’ of seizures which do not stop in response to typical anti-epilepsy drugs.

Alfie started having seizures he was just eight months old, and was properly diagnosed with the condition in 2015. His seizures have become more frequent as he has got older, and he now suffers from them every seven to ten days.

The only thing that briefly stops his seizures is steroids, but these can have serious side effects if over-used. Alfie often has to have up to 1,000 mg in a single dose, which is a very high amount.

Hannah Deacon with her son Alfie

Hannah and Drew, who also have a two-year-old daughter called Annie, believe getting cannabis treatment is the only way forward for Alfie.

Hannah said: “It’s just gone from bad to worse - he’s in hospital every week now.

“That’s why I decided to research medical cannabis. I’ve said to my doctor if he’s on medication that works but has side effects then we have to suck it up and deal with it, but nothing’s worked.

“I’ve been researching it for 18 months now - in rare cases it can stop the seizures but most of the time it reduces their severity and impact.”

Hannah Deacon with her son Alfie

Currently, the use of medical cannabis is illegal in the UK, which Hannah said was ‘massively frustrating’.

She added: “My child is suffering massively and it’s not fair.

“This is about children like Alfie with no quality of life to try something that time and time again has made a difference in other countries.

“More people die from alcohol and cigarettes than cannabis.”

A pupil at Thorn’s Infant School, Alfie has only managed to attend for a few hours at a time this term, although a teaching assistant often comes to visit him in his Blackthorne Road home.

Hannah and Drew is considering taking Alfie to hospitals in Germany, the Netherlands and the USA for treatment, but ideally she would like to take him to Europe as the medical bills are comparatively cheaper there.

They have set up a Facebook page called Alfie’s Hope to keep people informed about Alfie’s progress, created a Just Giving page for people to donate towards Alfie’s treatment and started a petition to make the use of medical cannabis legal in the UK.