Five-year-old Gino Londra once suffered such severe seizures he needed to wear a helmet to nursery.
His 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 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.
Although there is no cure, it means the determined 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 an eye-watering £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.”
‘It’s given him a life’
Gino has rare genetic disorders 1p36 deletion syndrome and West Syndrome, which cause severe epilepsy.
They were diagnosed eight weeks after birth when his arm would twitch uncontrollably.
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 something new — Bedrolite CBD oil.
“Before [trying the cannabis oil], he would be very sleepy due to the seizures,” she says.
“He’d sleep four or five times a day.
“He’d also be very withdrawn and wouldn’t really interact.
“That meant his motor skills couldn’t develop very well.
“It would slow down his eating and he needed a feeding tube because he couldn’t drink anymore.
“Whereas now, he reacts to things, he can crawl, play with toys, interact with people, and goes to school.
“Unbelievably, he’s actually gone to school more during the pandemic than he ever did before, which I know is the opposite for most just now.
“He tells us if he’s happy or if he’s unhappy. He wasn’t like that before. He appeared really chilled out but it was because he was so drugged up.
“It’s given him a life and he’s developing so much.”
Why isn’t it being prescribed?
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.
Epidyolex, a highly purified liquid containing CBD (an active ingredient taken from cannabis) can be used for the treatment of rare forms of epilepsy Lennox-Gastaut syndrome and Dravet syndrome.
There are other cannabis medicines approved for use during chemotherapy and for those with multiple sclerosis (MS).
The Medicines and Healthcare products Regulatory Agency (MHRA) approves licences for new medicines in the UK.
In Scotland these are then reviewed by the Scottish Medicines Consortium (SMC) which then advises health boards on their use.
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 however are now frequently 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 just 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.
Under the current rules, only specialist clinicians on the General Medical Council (GMC) specialist register can prescribe cannabis-based products where there is clear published evidence of benefit.
The decision on whether to prescribe a medicine for a patient, and which medicine to prescribe, is for the clinician in charge of a patient’s care to make, having taken into account the patient’s clinical condition and the safety of the patient.
This is regardless of whether it is an NHS clinician or a clinician working in a private clinic.
Fundraising
The situation means the family must continue their relentless fundraising drive.
They say it’s the only option they have unless something dramatic changes.
Charlene said: “I feel like going back to how it was isn’t even an option.
“I could not imagine taking this away from him and his poor little brain.
“It’s all about Gino and his quality of life.
“We constantly fundraise for the reason that we’re not going to run out of money.
“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.”