A father who claims his baby girl has been ‘left to die’ by British doctors says Charlie Gard’s family is inspiring him to fight for potentially life-saving treatment abroad.
Little Jorja Emerson has a rare chromosome disorder and epilepsy which has left her battling crippling seizures.
Doctors say her condition is terminal and she should be “taken home to die” after she suffered a 17-hour fit, according to her dad Robbie, 30.
He is in a race against time to raise £200,000 for an independent assessment in America where doctors claim to have successfully treated similar children.
The businessman said the impassioned court room battle by Charlie Gard’s parents has given him the strength to challenge doctors and fight for treatment abroad.
Charlie has a rare genetic condition and his life support will be withdrawn against his parents Connie Yates and Chris Gard’s wishes on Monday following a court ruling.
Robbie, from from Bangor, Co. Down, said: “Their fight has resonated with me.
“I can see in myself and in them the same love that a parent has for their child in impossible circumstances.
“People don’t understand what it is like to be told there is nothing that can be done to save your child.
“Charlie and his parents have inspired us to keep going.
“Like us, time has been against them.
“I don’t believe everyone has all of the answers and I don’t know all the answers myself, but I believe more can be done for Jorja.
“Just like Charlie’s parents, I believe there are things that can and should be done.
“When I see them I see the love that a parent has for their child and I understand a bit of what they are going through.
“They have had to go through the most difficult thing in the whole world – I can see that.
“Hopefully we don’t have to go face that, hopefully we will get the help we need and hopefully time for Jorja doesn’t run out.
“Charlie’s mum and dad said that don’t want his fight to be in vain and to help other families.
“I hope that there might be a chance and that we get the help we need before it’s too late.”
Mum Carly, 30, gave birth to Jorga in February 2016 who was born with a rare and chromosome disorder called 1q43-q44 deletion.
But despite suffering regular seizures – epilepsy is common in children with the condition – she was learning to roll over and could smile and giggle.
“She was meeting her milestones – just behind a bit,” said Robbie, a restaurant owner.
“She was grabbing her feet, putting toys to her mouth, that sort of thing.”
But in early July she suffered a 17-hour seizure and was put in an induced coma with strong medication for five days.
An MRI scan then showed parts of her brain – the white matter – was decaying.
Her parents claim a neurologist at Belfast’s Royal Victoria Hospital told them her condition was now terminal – and there was nothing that could do to save her.
“He said the matter was decaying – and decaying rapidly,” said Robbie.
“He said he didn’t know how much longer we had left with her and her said it wasn’t looking good.
“They have turned us away and told us there’s nothing more they can do for Jorja and just take her home to die.
“I walked out the hospital and I vomited.
“The doctor was adamant it wasn’t due to her seizures and it was part of her chromosome deletion and nothing to do with the repeated and prolonged seizures.
“But we want a second opinion. We don’t believe that.
“Before the 17-hour seizure she was a bubbly, giggling and contented baby, and now she is back to her usual self again.
“No other NHS neurologist will give us a second opinion here in the UK because the RVH neurologist feels he is correct and no one will go above him.
“I’ve done lots of research and I have found people who have had treatment not available here and ten years on their children are here.”
Robbie claims he has made contact with doctors in Boston who agree the decaying could be caused by her seizures, and could be controlled with targeted treatment.
He claims US medics have requested Jorja’s medical notes and intend to put together a treatment plan and expected costings – estimated to amount to £200,000.
“I believe – and they agree – that there are other options available to her there that aren’t available here,” said Robbie.
“The difference in the specialist treatment available here and in America could not be bigger.
“We just want a chance.”
Little Jorja is out of the ICU at the Belfast hospital currently being monitored at Ulster Hospital.
A spokeswoman for the Belfast Trust – which oversees Belfast’s Royal Victoria Hospital – said: “While we cannot comment on individual cases, we continue to do everything possible to provide support for this family at was it a very worrying time for them.”
