The Metro UK reports
Before Jorja Emerson started taking medical cannabis, she suffered 30 epileptic seizures a day and couldn’t even lift her head off a pillow.
Her eyes would roll into the back of her head and she regularly turned blue due to a lack of oxygen circulating her body.
Staff at the emergency department saw her so regularly they would say ‘here comes Jorja’, and her parents felt like they were constantly dialling 999.
In July 2017 after a particularly bad seizure, she was taken to intensive care and put on life support, with doctors in Belfast telling her parents she was going to die.
They said her brain was decaying, but her dad Robin Emerson never gave up hope that something could be done to save her.
Now aged five, Jorja, is thriving in ways no one could have imagined, having become one of the first children in the UK to be prescribed medical cannabis in 2018.
She took her first assisted steps a couple of months ago, is able to attend school, and can smile again – something she lost the ability to do after one of her seizures.
Jorja can now understand what’s going on around her, and whenever she does still have seizures they only last for a few seconds and she hasn’t stepped foot in an A&E department since.
But all of that progress is under threat, as the one doctor able to prescribe the specific cannabis medicine she is on recently retired.
Her parents say restrictive red tape prevents non-specialist GPs from prescribing, despite the fact she has already been given the go-ahead to take it.
They are calling for Health Secretary Sajid Javid to step in and change the rules, but with about a week’s supply left, they may be forced to leave the country instead.
‘We’re out of options. We’re talking about all sorts of things we may have to do as a family, which could include going to Canada,’ Robin tells Metro.co.uk.
‘I shouldn’t have to go and live in exile, I shouldn’t have to go and track someone down who’s willing to prescribe it.
‘If that’s what I have to do that’s what I have to do – Jorja’s not going to be going back into a hospital – I have to get this situation sorted.’
Jorja, from Dundonald, County Down, has a rare chromosome dilation called 1q43q44 – which causes a number of disabilities including seizures.
She’s the only child in Northern Ireland who has it – so her mum and dad turned to online groups for support from other affected families across the world.
During that difficult summer of 2017, Jorja’s parents went to the Boston Children’s Hospital for a second opinion and were told her brain wasn’t decaying due to a progressive condition – as suggested by doctors in Belfast.
They said every one of her seizures was causing serious damage each time and that she’d die if they weren’t brought under control.
Speaking to parents and doctors in the US, Canada, and Australia let them see how much of a difference medical cannabis was making to the lives of children with Jorja’s condition.
At this point it was still illegal in the UK, as the cannabis oil proving most effective in epileptic patients contains a small amount of THC – the main psychoactive ingredient of cannabis.
But there is far less of it compared to the cannabis people smoke recreationally, meaning the children who take the medicine don’t get high.
Robin, 36, was one of many parents who lobbied the government for a change in the rules, which came about in 2018.
‘We knew it was a race against time. I knew the next time Jorja was in intensive care she wasn’t coming home,’ he says.
‘She was still continuing to have 30 plus seizures at this stage every single day, and any one of those seizures could kill her.
‘Things just expedited around November 2018 and the government knew they couldn’t take any more pressure and they changed the law.
‘We thought at that stage, that was it, this war’s been won, we can now move forward. Little did I realise at that time that getting a prescription was the next massive hurdle.’
Doctors in the UK are still very reluctant to prescribe medical cannabis, suggesting more research is needed before they can advise mass prescriptions.