‘My daughter had 30 seizures a day. Medicinal cannabis helped turn her life around’
A dad whose daughter’s life was changed when she became the first child in the UK to be prescribed medicinal cannabis has opened a new health centre in Paddington.
Jorja Emerson was born in 2016 with a rare chromosome abnormality which meant she suffered devastating seizures.
Her parents did not initially suspect she had any health issues until she began to miss milestones. A doctor also noticed that her head was smaller than that of a typical baby.
Her father Robin Emerson told the Standard that her diagnosis had “hit him like a train”.
“You have all these aspirations for her and then you realise that life is going to be different.”
Twice the toddler ended up in intensive care after experiencing up to 30 seizures a day, with Mr Robinson being told by doctors to make provisions for end of life care.
“They told us to take Jorja home to die as there was nothing else they could do for her. It was horrendous and shook me completely.
“I remember being told and news and thinking, ‘what's the point in living?’”
But her life was changed when she obtained medical cannabis through a private healthcare company after struggling to get a prescription on the NHS.
“I started to fight to get a second opinion. One children’s hospital in America told us that Jorja wasn’t dying and that we just needed to get her epilepsy under control.”
Mr Emerson later discovered a private support group on Facebook where parents from across the world shared information.
There, they spoke to the parents of a child with the same chromosome deletion as Jorja who had successfully managed their symptoms using medicinal cannabis.
Mr Emerson fought for weeks to secure the landmark prescription to treat her severe epilepsy - the first prescription given to a child in the UK for the drug.
Five years later, she is “thriving” and she no longer suffers from seizures.
Robin was on hand to open the Jorja Emerson Centre, close to Paddington Station, that will offer MRI, genetic testing, sequencing and ultrasound and an accredited lab.
The clinic will aim to provide treatment for a wide range of conditions including general paediatrics, neurology, chronic pain and addiction. Over 30 enquiries for treatment were received on the first day of opening last month.
The centre will also soon be launching its own clinical trials.
Mr Emerson said: “I believe that you only die when the last person stops mentioning your name. I think Jorja’s name will be around long after I'm gone, and I want this centre to be at the forefront of innovative medicine.”
There are just three conditions accepted by the NHS for cannabis prescriptions: muscle spasms caused by multiple sclerosis, nausea caused by cancer-related treatment and severe epilepsy.
But the Standard reported last month that Londoners had spent an estimated £1.45 billion a year on illegal cannabis to self-medicate health conditions such as chronic pain. Many have struggled to obtain a prescription through the NHS or are unaware that it is available.
Mr Emerson hopes the centre will be a space that can educate patients and put their mind at ease.
”We are seeing many patients who have never tried cannabis before and are looking at it as a potential treatment. This is an environment where they can instantly feel safer.”