Fife parents Innes and Charlene Londra have spoken of the challenges they face in trying to fund the cost of medical cannabis for their five-year-old son Gino, who needs the life-changing treatment because he suffers from a rare genetic condition.

Five-year-old Gino Londra once suffered such severe seizures he had to wear a helmet to nursery. Parents Charlene and Innes have managed to wrestle back a life for their beloved boy, who has a rare genetic condition, but at an astronomical cost.

The UK healthcare system will not support what the family says has been a life-changing treatment for the Kirkcaldy youngster.

Over the past year, Gino has been taking cannabis medicine, which has been recently proven to cut seizures in some conditions such as severe epilepsy.

There is no cure, but it means the youngster now suffers just a fraction of the 800 seizures he once endured every month.

However, the cost for Charlene, a beauty therapist, and Innes, Gino’s full-time carer, is £750 per month to obtain privately.

The NHS will not prescribe it for him.

“It can’t be about cost because he’s actually received far more expensive treatments that haven’t worked,” Charlene, 32, says.

“It doesn’t really make sense.”

Gino has rare genetic disorders 1p36 deletion syndrome and West Syndrome, which cause severe epilepsy.

The conditions have taken over his life, stunting his development and triggering unpredictable seizures.

Doctors have tried various strict diets including the Atkins-style ketogenic, prescribed drugs, and even a £20,000 NHS-funded implant called vagus nerve stimulation (VNS).

Charlene says none of them have been effective so eventually they pulled together enough cash to try Bedrolite CBD oil.

“Before (trying the cannabis oil) he would be very sleepy due to the seizures,” she said.

“He’d also be very withdrawn and wouldn’t really interact. That meant his motor skills couldn’t develop very well,” she said.

“Whereas now, he reacts to things, he can crawl, play with toys, interact with people, and goes to school.”

She added: “It’s given him a life and he’s developing so much.”

Medical cannabis was legalised in the UK in 2018, meaning doctors can prescribe it in some circumstances.

However, the system of approving new drug treatments on prescription can be complicated in the UK. Currently, very few people can be prescribed medical cannabis.

In the case of Gino, doctors say they are unable to prescribe Bedrolite for him because it is an unlicensed product and the risks for people with his condition have not been fully assessed by regulators.

Private companies are now stepping in to offer cannabis treatments for conditions for which there is good evidence it will help and the patient has tried all else.

Scotland’s first medical cannabis clinic in Stirling, run by a private company, was approved last month.

When approached for comment, the UK Government’s department for health said funding of treatments is devolved to Scotland.

The Scottish Government said it could only provide information and not a comment due to the purdah period prior to the Scottish Parliament elections.

A spokesperson said the scheduling of cannabis based products for medicinal use (CBPMs) is reserved to the UK Government.

She said the regulation, licensing and supply of medicines is also reserved to the UK Government.

The situation means the family must continue their relentless fundraising drive.

Charlene said: “We’ve managed to fundraise about £15,000 in a year so that’s a year’s worth of medication. We just keep going and don’t take the foot off the pedal really because I just can’t imagine going back to that life.”

To help the family’s fundraising effort, donate online.

HEALTHCARE: Charlene and Innes Londra are doing all they can to help son Gino, who has rare genetic disorders which cause severe epilepsy.