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Fighter Dad reveals battle to save daughter's life as rules prevent GP prescribing medical cannabis

'Without cannabis Jorja will end up back in ICU and we know we won't bring her home'

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Robin cuddles Jorja this week

Robin cuddles Jorja this week

Robin cuddles Jorja this week

Campaigning dad Robin Emerson is desperate to save his little daughter's life.

Father to five-year-old Jorja, the Belfast man says Health Secretary Sajid Javid will have his daughter's blood on his hands if he doesn't amend guidance rules that would allow GPs in the UK to prescribe medical cannabis.

Jorja was born with a severe form of epilepsy that left her suffering with more than 30 seizures a day. She was also admitted to intensive care twice and spent six months in hospital.

Her parents were told the devastating news she was going to die when she was just one year old.

Yet she is still with them today and with the help of medical cannabis her seizures have all but stopped.

On Christmas Day three years ago it all changed for the better for Jorja.

"That was when Jorja got her smile back," Robin said.

"After that everything changed, it was the most special day of our lives."

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Jorja in hospital

Jorja in hospital

Jorja in hospital

She is now a happy and content child whose life will soon be in danger as the doctor in England who has been prescribing her with the life-changing medication is set to retire and guidance rules in place are preventing any GP to take on her care.

"Medical cannabis is legal but there are guidance rules that are stopping GPs from agreeing to write prescriptions which is just crazy.

All you have to do is look at my daughter and see the progress she has made to see what a difference medical cannabis has made to her life and to many other children who have suffered like her," Robin told Sunday World.

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"The bottom line is if we can't keep on giving her the medication she will end up back in ICU and we know if that happens we won't be bringing her home, she will die and for what? Because someone has decided to write guidelines that stops GPs from wanting to or being associated with prescribing medical cannabis.

It really is what is keeping Jorja alive and giving her the best chance of a happy childhood without seizures," he said.

After being told his precious child was not going to survive, Robin turned to medical cannabis after speaking to other parents around the world in the same situation.

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Jorja with dad

Jorja with dad

Jorja with dad

"Jorja has such a rare condition, a chromosome abnormality that there is no name for it, other than a 1q43q44 Deletion. So few children have it that I had to go to Unique Charity who put me in contact with parents like me.

"There was no one local or in the UK for me to speak to but they set up a private group on Facebook and that's how I came to hear about medical cannabis.

"I was desperate to do anything to help her, I had to fight for her three years ago to make cannabis legal for medical conditions, and Jorja became the first child in the UK to receive a prescription in December 2018, and now I am fighting for her again. I am her voice.

"After all we have went through getting to where we are, I can't believe we have to start all over again. Fighting to get her the help she needs to stay alive basically.

"Other children, like Murray in Scotland, are in the same position, a little boy when I first met him was in a wheelchair and now he's a happy little boy running around enjoying life.

"Dr Adelaida Martinez, one of only two doctors in the UK who is willing to issue a prescription for CBD medication, retired at the end of September, which means that Jorja and other epileptic children are now left deserted by the broken system.

"When she leaves we will only have one month's supply left and then that's it. God knows what effect it will have on her, to stop the MC so quickly.

"We don't know what those side effects will be and then we know the seizures will come back and when that happens that's it for Jorga, I don't think she would be able to survive another bad episode. I'm terrified for my daughter's life. The clock is really ticking here and there is something so simple to stop it."

Robin, with the support from parents, continues to campaign for a change in policy and guidance from the Department of Health to enable this group of children to access this vital treatment.

He has repeatedly written to the Health Secretary Sajid Javid - as has Jorja's doctor -but hasn't received a response. He has also written to Prime Minister Boris Johnson but has received no reply to date.

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MP Gavin Robinson

MP Gavin Robinson

MP Gavin Robinson

 

East Belfast DUP MP Gavin Robinson is supporting the desperate family who are heartbroken at the thought of what lies ahead if change is not made immediately.

Mr Robinson said: "Robin has valiantly pushed the boundaries for his daughter Jorja over the last few years.

"As he continues to do so, I will support them all the way. It remains a nonsense that the legal ability to prescribe exists, yet clinically, too few clinicians will do so.

"Their lifeline lay in a private consultant at personal expense who is due to retire.

"As the now Health Secretary was the then Home Secretary who changed the law, Sajid Javid needs to see sense and act quickly to protect Jorja and the wonderful children like her who rely on their medication for life itself."

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