The judge in the infamous Charlie Gard case has allowed the name of the expert neurologist who thinks experimental therapy will help the infant boy to be revealed. The expert is none other than a Harvard-trained neurologist who is a professor at the prestigious Columbia University.
Hirano’s research focuses on mitochondrial diseases and genetic myopathies. He is participating in the clinical trial of idebenone for MELAS patients. Together with Co-Principal Investigators, Drs. Salvatore DiMauro and J.L.P (Seamus) Thompson, Dr. Hirano is co-directing the North American Mitochondrial Disease Consortium (NAMDC).
Hirano serves on the NIH Therapeutic Approaches to Genetic Diseases (TAG) study section, Medical Advisory Committee (MAC) of the Muscular Dystrophy Association, and Scientific Advisory Board of the United Mitochondrial Disease Foundation.
Charlie suffers from a rare genetic disorder, mitochondrial DNA depletion syndrome, which can cause weakened muscles and organ dysfunction, among other symptoms, and though his parents have raised money for additional treatment and hospitals around the world have volunteered their services, hospital officials have refused to allow the infant to be released to his parents. Hirano is clearly an expert in the field and a specialist who is intimately familiar with Charlie’s condition.
Charlie’s parents Chris Gard and Connie Yates want the judge to rule the 11-month-old should be allowed to undergo a therapy trial overseen by Dr Hirano in New York. Doctors at Great Ormond Street Hospital in London say the therapy is experimental and will not help.
Judge Francis initially ruled that Dr. Hirano’s name could not be made public for fear of public pressure put on Hirano, but the specialist doesn’t mind and believes it would be the the public’s interest to be named.
The judge in the Charlie Gard case has ordered little boy’s head to be measured to determine if there is any brain development.
His request for the measurement came after Judge Francis sparked outrage from Charlie’s parents when he said that they had previously said it’s okay if Charlie dies. Charlie’s parents were so Furious by what the judge said they walked out of the courtroom.
Now, new reports indicate Judge Francis wants an independent third-party to measure Charlie’s head to determine if there has been any brain development. Francis said the measurement should resolve the debate over whether there has been any improvement in Charlie’s condition and whether an experimental treatment may be able to help further.
“If there is important new evidence that suggests my decision should be changed then I will change it,” judge Nicholas Francis told the hearing at London’s High Court. “What I can’t do … is reopen issues that already have been dealt with, not only be me, but by the Court of Appeal.”
Yates said she had used her own tape measure on Thursday to measure the circumference of her son’s head, claiming it is 2cm larger than GOSH had recorded. Grant Armstrong, representing Charlie’s parents, said that Ms Yates had recorded a measurement of 42.4cm.
Francis said: “If I’m being told the measurements being taken by a world famous hospital are wrong I have to have more evidence than you telling me. It is absurd that the science of this case is being infected by the inability to measure a child’s skull. “I want this resolved in the next 24 hours,” he told Mr Armstrong.
Armstrong indicated the couple thought they had evidence which was new. As well as, the specialist in the US who was offering therapy, a hospital in Rome had also made an offer, Mr Armstrong said. He said there was evidence to suggest the proposed therapy would not be futile. Mr Armstrong said the American doctor offering treatment was a “world authority” and that the therapy on offer was not “fringe science”.
He said: “There is a respectable body of authoritative opinion. There are treatments available. The parents seek to re-open the case in relation to the chances of success of treatment.”
Armstrong, the attorney for Charlie Gard’s parents, said the treatment would give Charlie a 10% chance of recovering and that that was enough.
“There is likely to be muscular improvement, there is likely to be an effect whereby the treatment crosses the blood-brain barrier and it’s likely the treatment will have an effect on the mitochondria,” said Armstrong. He said the effect on the mitochondria would include “meaningful brain recovery”.
According to an expert there was a 90% chance of the treatment crossing the blood-brain barrier and a 56% chance of it generating muscular recovery in Charlie, the court heard.
Another expert has put the chances of the treatment crossing the blood-brain barrier at 100% and the chances of increasing mitochondrial DNA at 60%, according to Armstrong. Under reporting restrictions imposed by the supreme court, none of the doctors giving evidence can be named.
Charlie’s parents also argue that GOSH’s claim that he has suffered irreparable brain damage is erroneous. Armstrong quoted an expert who had reviewed MRI and ECG scans and concluded it “didn’t indicate any moribund diagnosis”.
He told the court the evidence “renders unsafe” the court’s previous finding of futility with respect to Charlie’s improvement chances.
As well as the quality of the evidence, the case will hinge on whether it is new, as the judge has made clear the hearing is not a review of material previously put before the court.
He said: “We all want what’s best for Charlie and if there’s important evidence that suggests my decision should be changed, I will change it.”
In a statement made on the couple’s behalf outside the Royal Courts of Justice, their spokesman Alisdair Seton Marsden said: “They are hoping to sway the judge to rule in favour of their son’s life by granting them permission to seek alternative treatment with medical experts specialising in the disease affecting Charlie – mitochondrial DNA depletion syndrome.”
Chris and Connie said in the statement: “We are continuing to spend every moment working around the clock to save our dear baby Charlie.
“We love him more than life itself. If he’s still fighting, then we’re still fighting.”
But specialists at Great Ormond Street in London, where the little boy is being cared for, say therapy proposed by a doctor in the US is experimental and will not help.
Judge Nicholas Francis insisted there must be “new and powerful” evidence if his earlier rulings were to be reversed. While there is evidence of treatment helping other children with Charlie’s condition, it’s unclear if it will meet Judge Francis’ definition of “new and powerful.” His earlier rulings barred Charlie from traveling abroad for treatment and authorized London’s Great Ormond Street Hospital to take him off life support.
Multiple hospitals and medical experts say that an experimental treatment could provide Charlie with hope and attorneys today argued in court that his parents ought to be given the right to allow him to have it. But attorneys for the hospital argued that the information about the experimental treatment was already available during previous consideration of the case and that there was no reason to go back on the decision to revoke Charlie’s life support over his parents objection.
Charlie’s mother Connie Yates told Sky News that seven specialists around the world support experimental treatment for her son and that it has “an up to a 10 percent chance of working.”
“I hope they can see there is more of a chance than previously thought and hope they trust us as parents and trust the other doctors,” she said.
Reverend Patrick Mahoney, a pro-life American pastor helping the couple, said he is delighted that a British High Court denied Great Ormond Street’s Hospital’s request to deny a hearing allowing new evidence in the Charlie Gard case.
He added: “If this new evidence is accepted, Charlie will be able to receive experimental treatment in the United States or other countries. Our prayers are with Charlie and his parents and we would hope the court would respect The wishes and rights of his parents to move forward with medical care that will improve the health of their son.”
Americans United for Life President & CEO Catherine Glenn Foster is also in England helping Charlie’s family.
She told LifeNews: “Great Ormond Street Hospital asked for Mr. Justice Francis to affirm his prior, April ruling, and the Justice denied them. The book is not closed on Charlie Gard, and little Charlie still has a chance. International attention has been focused on this brave couple, Connie and Chris, fighting for the life of their son, and I will remain in London calling for the rights of parents to make decisions for their children’s care, and for hospital officials to open their doors and let Charlie’s parents seek groundbreaking new treatment for their son.”
“I am Charlie. We all are Charlie. He could be my child, or your child, or any one of us,” said Foster. “The life and death struggle facing Charlie’s parents could happen to anyone, which is why we are fighting for their right to determine their son’s welfare.”
Foster continued: “As a mother, I could not stand by as Charlie’s parents so bravely fought to seek life-saving care for their son,” said Foster. “Here we have an institution created to serve the most vulnerable in our society and hired to care for little Charlie, and yet is battling his parents to strip them all of their rights. No matter how diverse and pluralistic we are as a culture, there is one thing that unites us all: the family. We all want a better future for our children, and that’s why families worldwide are responding so strongly to Connie and Chris’s fight to give Charlie a chance.”
Charlie suffers from a rare genetic disorder, mitochondrial DNA depletion syndrome, which can cause weakened muscles and organ dysfunction, among other symptoms, and though his parents have raised money for additional treatment and hospitals around the world have volunteered their services, hospital officials have refused to allow the infant to be released to his parents.
Charlie’s parents have brought Terri Schiavo’s brother Bobby Schindler to London to help them fight for care for their son. Schindler has arrived in Britain to help them just as they are preparing to meet with executives from the hospital that is denying Charlie treatment that has won a legal battle to remove his life support over their objections.
Schindler spoke with LifeNews exclusively about their invitation.
Schindler told LifeNews: “We are here by invitation from the family to come alongside them as they struggle to save their son, Charlie. The critical issue here is not a political one, but the simple notion that families know what is best for their loved ones.”
“Charlie’s situation is very reminiscent of my family’s battle to save my sister, Terri. Hopefully being here can help his parents, Connie and Charlie, deal with the day-to-day emotional roller coaster, as they fight for their son’s right to live,” Schindler added.
Schindler told LifeNews he is calling for officials in Great Britain to honor the wishes of Charlie’s parents and allow him to travel and receive the medical help he needs. He said he will be working with and alongside the family to facilitate their desire to obtain medical care for Charlie and oversee a campaign to ensure the family is not removed from the critical decisions being made concerning Charlie’s future and well-being.
Meanwhile, a New York City hospital has offered to help Charlie. In a statement, New York Presbyterian Hospital and Columbia University Irving Medical Center said it had agreed to admit Gard.
“New-York Presbyterian Hospital and Columbia University Irving Medical Center have agreed to admit and evaluate Charlie, provided that arrangements are made to safely transfer him to our facility, legal hurdles are cleared, and we receive emergency approval from the FDA for an experimental treatment as appropriate,” the hospital said in a statement.
New York Presbyterian also said, as another option, it would ship the experimental drug to London’s Great Ormond Street Hospital, where Charlie is currently receiving care, if the FDA approves. The hospital said it would advise medical staff at Great Ormond on administering the treatment to the baby “if they are willing to do so.”
“Alternatively, if approved by the FDA, we will arrange shipment of the experimental drug to Great Ormond Street Hospital and advise their medical staff on administering it if they are willing to do so,” the statement read.
A Vatican hospital said it was ready and willing to care for British infant Charlie Gard but British officials refused to allow the little boy to leave the country. The Italian news outlet Zenit reported that leaders of the Bambino Jesus pediatric hospital in Rome, Italy said they are willing to care for Charlie if the courts will allow him to be transferred to their hospital. But Britain’s Foreign Minister Boris Johnson refused.
Charlie entered Great Ormond Street Hospital in London in October and was diagnosed as suffering from a form of mitochondrial disease that causes progressive muscle weakness and brain damage. Subsequently his parents discovered that 18 people in the United States had been treated with an oral medication of naturally occurring compounds to remedy this rare condition. Reports have not identified the doctor who initially agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.
The main argument offered by the hospital to countermand parental authority was to protect Charlie’s “best interests.” However, attorneys for Charlie’s parents argued that the hospital was basically holding Charlie hostage, violating several articles under the European Convention on Human Rights, including the rights to life, liberty and family privacy.
Source: Life News