Robin Emerson is running out of time. Five months ago, he wrote to health secretary Sajid Javid asking for one simple thing: that his five-year-old daughter Jorja could continue to be prescribed the life-saving drug that has been keeping her healthy and happy for the last three years. He has yet to receive a reply.
Jorja, who suffers from a rare chromosomal condition which has seen her hospitalised with life-threatening seizures many times, has been taking medical cannabis since 2018. Perfectly legal, it has been a ‘wonder-drug’ for the lively little girl. Jorja is now mostly seizure free and her quality of life has improved immeasurably.
"Doctors told us in 2017 that Jorja would die and we’d have to say our goodbyes," says Emerson, 36, a company director from Belfast. "But when we tried her on medical cannabis, we began to see an improvement within weeks. On Christmas Day 2018, she smiled for the first time in such a long time, and it was wonderful.
"She got better and better and today she laughs and giggles and enjoys life. But we have hit a hurdle and if the government don’t do something soon, the consequences will be grave – not only for Jorja but for other children who need this drug".
The hurdle could mean that thousands of patients might not be able to access the drug. At the end of September 2021, the only clinical specialist in the UK prescribing medical cannabis for Jorja and other children like her, retired from office.
No provision was made to replace her in this role and NICE guidance has not been widened in order to allow GPs to prescribe the natural medicine. This lapse could mean the imminent end to the NHS prescribing ongoing treatment for Jorja’s life-threatening condition.
"Without the medicine Jorja will relapse and could possibly even die," says Emerson. "The NHS keep saying more research is needed into medical cannabis and we accept that. But when you’ve tried every other avenue and know it works for Jorja and other children and they need it to stay alive, we’re happy to give it to them now.
"I’ve also written to the prime minister – a father himself – but still no response. The fact they won’t engage with me is so frustrating. We’ve got until February until her current prescription runs out, so we are really up against a deadline."
It was when she was around 10 months old that Emerson – and his then partner Carly, Jorja’s mother – realised that something might be wrong with their baby girl.
"At first, being a father was amazing and we had all these plans for the future but at 10 months we realised that she wasn’t meeting her normal milestones and couldn’t do things like sit up or roll over," he says.
A registrar at the hospital arranged for testing to be done and it was found that Jorja has something called the 1q43q44 deletion – a very rare chromosomal condition. She is only one of two people with it in the UK and about 2,000 globally.
"She began having epileptic seizures when she was around 11 months old. It’s the kind of extreme epilepsy that needs medication to come out of a seizure, so we were calling 999 and were in and out of hospital all the time. It was very worrying and in July 2017, she ended up in intensive care where doctors told us – wrongly – that her brain was decaying and she was going to die. It was the worst moment of my life. I walked out of the front door of the hospital and even thought about throwing myself in front of a car, because what was the point? But something held me back."
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Emerson then put a message on a Facebook group for parents of children with similar conditions and received incredible support. "Everyone said I had to keep fighting, none of them had been told about this ‘brain decay’ and so I started researching everything I could fought with the doctors to put my daughter into a very deep sedation, because that had been found to bring children out of serious seizures. It was risky – because we could lose her – but it had helped bring other patients round. And it worked. But Jorja was like a different child. No smile. It was as if she wasn’t there."
Emerson continued to research, contacting hospitals and families all over the world and came across medical cannabis. "We saw a video of a child in Australia who had gone from barely able to function to thriving and having a great life," he explains. "I started speaking to experts and lobbied to get the government to change the law so that it was legal in this country to prescribe medical cannabis."
Ironically, it was the health secretary who made it legal to prescribe medical cannabis but thanks to the guidelines suggesting more research was needed, doctors were unwilling to prescribe. Eventually, one specialist consultant was given the green light to prescribe Jorja the medicine she so desperately needed the little girl began to thrive.
"She hasn’t stepped foot near a hospital and is living a great life and now that doctor has retired our own GP says he’s happy to write the prescription if he is told he is allowed, but that hasn’t happened," says Robin.
"It’s now getting to the point where we are even thinking of moving to Canada (where the drug is made) for a short while, but really it’s in the hands of the government. All they need to do is give other GPs permission to prescribe medical cannabis so we’re asking people to write to their MPs and ask for help or sign our petition. We are really against time so all I’m hoping for is a letter from Sajid Javid to say it’s possible and our little girl can have the drug she desperately needs."
For more info visit the Jorja foundation.