Daily Mirror (Northern Ireland)
Billy mum joins Jorja’s fight for cannabis oil
THERE are few people Robbie and Carly Emerson trust to hand over their toddler to – but Charlotte Caldwell is one of them.
The Co Tyrone mum who this weekend secured medicinal cannabis for her son Billy is supporting the Emersons as they battle for treatment for two-year-old Jorja.
And with Charlotte and Billy still in London, the Emersons are leading the charge in Northern Ireland as the push for full legislation of medicinal cannabis continues.
Charlotte said: “It is people like wee Jorja Emerson who we are fighting for.
“Her parents experienced the very same dismissive attitude to their child’s health as I did with Billy.
“I have held Jorja in my arms, Billy has played with her, she is a vital and beautiful little human being.
“But the treatment she was given in Northern Ireland a year ago leaves her sedated and barely able to stay awake.
“When others her age with the same condition are thriving under the care of experts in medicinal cannabis, how is that fair?
“Just like Billy, wee Jorja deserves to be able to live her best life every day.
“She is one of thousands of children who need to be given the chance.
“I want to meet Home Secretary Sajid Javid and Health Secretary Jeremy Hunt urgently this week, to get assurance that not only will Billy’s meds never again be removed, but to call for an urgent review of the overall policy on medical cannabis.
“I can assure Mr Javid I’m not going anywhere until this is now put in place and this medicine is made accessible to all the other children that desperately need it.
“This experience that myself and my little boy have endured in this last week has been horrendous.
“I do not want, and I will not stand by and let, any other family in our country endure it. It’s horrific and cruel.
“I want nobody in Government, and nobody who has been impacted by massively outdated laws, to be under any impression that this is job done. This is just the start.
“The energy we’ve brought to Billy’s campaign is as nothing compared to what we are prepared to unleash to drive complete reform.” Under the present law, anyone who prescribes cannabis oil could be handed a 14-year jail term.
Reform will mean children like Jorja will have a fighting chance to have the seizures linked to her condition under control.
Jorja was born in 2016 with a rare chromosome disorder which causes developmental delay but is not life threatening
But it triggered stage 4 epilepsy and every seizure puts her life at risk.
After delayed diagnosis, Jorja was labelled as “terminal” by doctors in Northern Ireland but US experts in the her condition say the sedative medication she has been prescribed here could kill her.
The American team advised her parents to have her assessed for medicinal cannabis used successfully by kids with the same conditions.
Just like Billy, Jorja has fought for life with the help of her family and Charlotte. Two years on she is healthy apart from increasingly savage seizures which could kill her. Robbie, Northern Ireland Director of Families4access, said: “We were told Jorja was dying, that her brain was decaying at a rapid rate, that there was nothing that could be done for her.
“We were told we needed to be realistic and get our affairs in order. But Carly and I knew our daughter was still developing and we couldn’t see how her brain was decaying. She was
I can assure Mr Javid I’m not going anywhere until this is put in place CHARLOTTE CALDWELL LONDON YESTERDAY
able to communicate with us and she was engaged and engaging.
“With no answers here we approached Boston Children’s Hospital and then we were forced to go to court to get Jorja’s medical notes released from Belfast.
“Boston came back after assessing her notes and scans and explained while she had a genetic condition, she was not dying and her brain was not decaying. They were horrified by the drugs she was on and said if anything would kill her, the prescribed sedation would.
“She is on a sedatives several times a day and one in particular was pinpointed by Boston as being so dangerous they had banned its use.
Our medical experts in Northern Ireland have turned Jorja into a junkie. We want her back, undrugged, awake and safe.”
Carly said: “We see our children struggling with the medications in the UK and then we look at Australia and other countries and it’s a different matter.
“They are on medicinal cannabis and they are thriving. Up and walking and playing and getting on with their lives.
“We believe medicinal cannabis is the way forward for Jorja and many other children. We’re stuck in this horrible fight for common sense but we are up for it.
“There are some children that this help will come too late – we don’t want that for Jorja. Charlotte has led the way here with Billy and we have supported her.
“Now they are in medical exile in London and she has asked us to carry on her work.
“Today we are asking people to join us on Facebook at Families4access. We are asking people to help us explain what we need and why we need it.
“We started this fight for Jorja and we were afraid. Now we have found our way thanks to Charlotte and Billy and we are fighting for all the kids who need the chance of medicinal cannabis.
“Charlotte’s success with Billy’s medication was a triumph for us all and we now have the strength to keep going.
“But we need the country behind us. Billy and Charlotte have managed to do what no one else has in Northern Ireland, they have united divided communities. Please join us and please do it now.”