The reason Jorja exists
Jorja Emerson was having around 30 seizures a day. Her father Robin was told she would not survive. This is what happened next, and why it built a clinic.
The journey
A family's search for answers became a campaign for lawful access, then a promise to make specialist care simpler for others.
2016
Jorja Emerson was born in 2016 and grew up in Dundonald, County Down. At ten months old she began having seizures, linked to a rare chromosome deletion. Within a short time she was having around 30 seizures a day, of several different types.
2017
Jorja was taking six anti epileptic medicines at the same time. None of them brought her seizures under control. She was admitted to intensive care twice. Her family were told by a Belfast hospital that her brain was decaying and that she would not survive it.
2017
Robin employed a law firm simply to obtain his daughter's medical records. He sent them to Boston Children's Hospital for a second opinion. Boston came back to say that in their view Jorja's brain was not decaying and she was not going to succumb to it, and that it was her seizures and her medication that needed to be controlled. A later scan confirmed it. The diagnosis was corrected to intractable epilepsy.
2018
Robin and Jorja's mum, Carly, joined other families campaigning for legal access to medical cannabis in the UK, working alongside the End Our Pain campaign and Families 4 Access. Robin spoke to press, to politicians, and to anyone who would listen.
1 November 2018
Cannabis based products for medicinal use were moved to Schedule 2, making them legally prescribable in the UK by specialist doctors. Robin asked Jorja's private paediatric neurologist for a prescription that same day. She agreed. That evening it was withdrawn after pressure from a professional body. It was reinstated only after intervention by the End Our Pain campaign and the All Party Parliamentary Group.
4 December 2018
At The Portland Hospital in London, Jorja became one of the first children in the UK, and the first after the November 2018 law change, to be legally prescribed medical cannabis by a doctor. Her prescriber was Dr Adelaida Martinez, consultant paediatric neurologist.
“The dam has now broken open.”
Robin Emerson, ITV News, 4 December 2018
2019
Improvement began at around five and a half weeks. Within 12 weeks Jorja had gone from more than 30 seizures a day to around 1 to 5, and on some days just 1 or 2. Her smiles and giggles came back, after they had disappeared completely during her worst seizures. In April 2019 Robin gave written evidence to the Health and Social Care Committee at Westminster, setting out what the family had been through.
2021
When Jorja's prescriber retired, Robin could not find another paediatric neurologist willing to take over. He wrote to the Health Secretary. The case was raised in the House of Commons. Families across the UK were facing the same wall, and many still are.
Access is still far too hard. Very few specialists, and fewer paediatric neurologists, will prescribe, and families are still left to fight alone. Robin and the family continue to campaign for fair access. This clinic is part of that work.
Hood up, several sizes too big, feet nowhere near the end of the bed. Jorja has strong opinions about hotel dressing gowns and all of them are correct.
Full princess dress, a real castle, and dad on carrying duty all day.
Minnie Mouse sunglasses are non negotiable. So is getting sand absolutely everywhere.
No birthday, no party, no reason. Just a very good afternoon and a laugh that fills the room.
Three dressing gowns, one bed, and a small person in the middle who is extremely pleased with the arrangement.
Jorja came down the aisle in her own car, carrying a sign that read “Daddy, it’s time to give Chloe our last name”. She delivered it perfectly.
Carried in between the two of them, laughing at something only she found funny.
The flower wall, the good dress, and one very long day that nobody wanted it to end.
Today
Jorja exists because that fight should never have been necessary. Everything about how this clinic works, one simple price, clear fees, records handled properly, specialist doctors, real support, comes from what the Emerson family learned the hard way.
These photographs are published with the family's consent. Images of Jorja are used with permission and must not be reproduced without it.
“Three years ago, the then Home Secretary Sajid Javid took steps that saved my daughter's life. The seizures stopped almost completely.”
Robin Emerson, writing in City AM, 8 November 2021
Robin and Jorja's story was reported widely as the law changed.
ITV News“Two-year-old girl becomes 'first child to be prescribed medical cannabis in UK'”
Read the coverage
Daily Mail“UK first for the girl of 2 prescribed cannabis to cure seizures”
Read the coverage
UK Parliament“Written evidence to the Health and Social Care Committee”
Read the coverage
City AM“We need your help, Sajid Javid”
Read the coverage
Forbes“U.K. Kids Face Loss Of Life-Changing Cannabis Medicine”
Read the coverage
Talk TV“Robin Emerson interviewed on Talk TV”
Read the coverageRobin has told the story in his own words.
From the founder
When Jorja became ill, our family learned how frightening it is to know that something is wrong and still struggle to get the right answers. We had to fight for records, seek another medical opinion and keep asking questions when it would have been easier for the system if we stopped.
I learned that families and patients are often expected to navigate a complicated process while already carrying enough. Clear information is hard to find. Costs can be difficult to understand. Too much depends on whether you know who to ask and how hard you are prepared to push.
I built Jorja to make that experience different. The clinic should be straightforward, honest about cost and careful with every person who comes to us. Nobody should have to beg to be heard. They should be treated with dignity, supported properly and told the truth.
Robin Emerson
Robin Emerson, Founder
One membership. £9.99 a month. All treatment is subject to clinical assessment and eligibility.