Shock death of campaigning mother who triggered change in cannabis laws for epileptic kids

A parent who fought for the NHS to prescribe her lad aesculapian cannabis lipid to assistance forestall 500 epileptic seizures a period has died, aged 45.

Hannah Deacon, from Kenilworth, Warwickshire, successfully campaigned to person the instrumentality changed to alteration children similar her lad Alfie to entree the Class B cause connected the wellness service.

A connection connected her website work that she died connected Tuesday surrounded by her loved 1 aft a 'short and brutal illness'.

It added she was 'remarkable, determined, tenacious, and fiercely compassionate'.

'Her combat to find attraction for her lad Alfie's uncommon and terrible epilepsy led to a breakthrough that changed his beingness and yet changed the law.'

The announcement comes  weeks aft Mrs Deacon stepped down from the Medcan Family Foundation, a foundation that helps families entree cannabis medications, citing wellness reasons. 

Her lad Alfie, who utilized to person 150 seizures a week, became the centre of a run to alteration patients to entree cannabis lipid erstwhile helium was conscionable seven. 

Mrs Deacon championed the question successful 2018 aft discovering Alfie's information dramatically improved aft taking the medicine successful the Netherlands, wherever it was legal. 

Alife would extremity up being the archetypal diligent successful Britain ever prescribed the cause connected the NHS. 

Speaking successful 2022, she said Alfie, past 10, had been escaped from seizures for 2 years since utilizing the drug. 

The connection connected her website paid tribute to her work, stating she 'went connected to alteration the lives of thousands of patients and families, ne'er stopping successful her enactment to propulsion for amended access, amended care, and a amended knowing of aesculapian cannabis'.

It added that her nonaccomplishment to the household was 'impossible to enactment into words'.

'More than anything, Hannah's astir arrogant and important relation was being a mum.'

Alfie experienced his seizure astatine conscionable 8 months old. 

The household recovered themselves astatine a nonaccomplishment arsenic doctors could not observe what was causing his seizures, which were putting him successful infirmary astir 50 times a year.

Eventually, astatine the property of five, Alfie was diagnosed with PCDH19.

This is simply a terrible refractory epilepsy information meaning it doesn't respond to medications usually prescribed to dainty it. 

Speaking successful 2022, Mrs Deacon recalled: ‘We were told by our past neurologist that helium whitethorn get amended with property and there’s thing other we tin do.’ 

While Alfie was fixed drugs to assistance negociate the information these came with 'severe broadside effects'.

Mrs Deacon said: ‘He was ever either having hundreds of seizures oregon was astatine location with maine arsenic his full-time carer. He was hitting, punching and kicking me, screaming, not sleeping - determination was conscionable nary prime of beingness for him.’

‘I conscionable thought astatine that constituent good no, I’m not going to judge that, I’m not going to judge that I conscionable anticipation for the champion and anticipation helium doesn’t die.'

After probe and speaking to different parents with epileptic children, Hannah raised funds to question to the Netherlands successful 2017, wherever aesculapian cannabis lipid is legal, truthful that her lad could payment from the treatment.

Mrs Deacon said she saw an contiguous betterment successful Alfie - and his seizures came down to conscionable 1 a month.

But erstwhile forced to instrumentality location and travel disconnected cannabis oil, Alfie's information instantly deteriorated.

This launched his mother's tireless run to get medicinal cannabis prescribed connected the NHS which successful 2018 was successful. 

While the instrumentality changed, getting the aforesaid benignant of cannabis lipid connected the NHS that Alfie received remains a challenge.

Earlier this twelvemonth the BBC reported that less than 5 patients person been prescribed what is known arsenic 'full-spectrum' cannabis lipid implicit the past six years. 

This is an unfiltered merchandise that besides contains tetrahydrocannabinol (THC) the psychoactive constituent of cannabis.

While cannabis oils without THC are disposable connected the NHS galore families assertion lone the 'full-spectrum' mentation helps combat the seizures their loved ones suffer. 

Families person reported smuggling supplies into Britain oregon ordering the lipid illegally online without a medicine successful a bid to get their loved ones the drug.