The dedication and perseverance of Charlie Gard’s parents have inspired another British family to fight for their seriously ill daughter.
One-year-old Jorja Emerson is suffering from epilepsy and a rare chromosome disorder called 1q43-q44 deletion, and her family said doctors think she should be taken home to die, the Mirror reports.
Robbie Emerson, 30, of Bangor, Northern Ireland, said he would like to take his daughter to the United States for an independent assessment of her condition. Inspired by Charlie Gard and his parents, Emerson is working to raise £200,000 for his daughter’s journey to the U.S. and medical care.
“Their fight has resonated with me,” he said. “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.”
Emerson said his daughter suffered from a 17-hour epilepsy fit, and afterward doctors told him that Jorja’s case basically was hopeless.
Here’s more from the report:
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.
Doctors said her brain matter is decaying rapidly, and she is dying.
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“They have turned us away and told us there’s nothing more they can do for Jorja and just take her home to die,” Emerson said. “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.”
The family has chosen to continue fighting and hoping instead. Her father said they have done extensive research about her condition, and they want a second opinion before they let go of their little girl. He said he has been in contact with a doctor in Boston who may be able to offer Jorja treatment.
“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,” Emerson said. “I hope that there might be a chance and that we get the help we need before it’s too late.”
Charlie Gard’s parents fought for months to transfer him to the United States for an experimental treatment. They raised more than $1.5 million for his care. His parents said they knew the chance of the experimental treatment working was slim, but they wanted to try anyway for Charlie’s sake.
However, the courts and hospital refused to allow them to transfer their son to another hospital. About a month ago, the European Court of Human Rights ruled that the hospital can remove Charlie’s life support and allow him to die. However, the hospital recently agreed to consider new evidence involving Charlie’s condition before taking him off the ventilator.
But on Monday, lawyer Grant Armstrong, who represents Charlie’s parents, said experts confirmed that it is too late to treat their son. Only then did Charlie’s parents decide to end their legal battle.
Several weeks ago, Charlie’s mother, Connie Yates, told Good Morning Britain that she does not want her son to suffer.
“He’s our own flesh and blood and we don’t even have a say in his life whatsoever,” Yates said. “We are not bad parents, we are there for him all the time, we are completely devoted to him and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”
Despite all of his problems, Charlie’s parents – and millions like them – believe that Charlie is a valuable, living human being who should have been given a chance to live.
