Author: Hannah Brockhaus | Source: CNA
The American doctor whose experimental treatment has been sought by the parents of Charlie Gard will travel to London on Monday, after a judge ruled that he could examine the baby and confer with the UK doctors.
On Friday, the specialist in mitochondrial diseases and genetic myopathies agreed to travel to examine Charlie in-person at the Great Ormand Street Hospital in London.
The neurologist testified via video July 13 that he believes the 11-month-old has at least a 10 percent chance of improving under his treatment, and possibly as high as a 56 percent chance.
The doctor, Michio Hirano, whose name was revealed after a court order was lifted Friday, is a professor of neurology at the Columbia University Medical Center in New York. He is the doctor overseeing the therapy trial Charlie's parents had sought to join before being denied by the hospital and courts.
Friday’s development comes one week after Great Ormond Street Hospital applied for a new hearing with the high court, citing new evidence suggesting the critically ill baby could benefit from an experimental treatment.
A team of seven international medical experts had alerted the hospital that fresh, unpublished data suggested that an experimental drug could improve Charlie’s brain condition.
“Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment,” a hospital spokesman said, according to the BBC.
“We believe, in common with Charlie's parents, it is right to explore this evidence,” they continued.
“Great Ormond Street Hospital is giving the High Court the opportunity to objectively assess the claims of fresh evidence...It will be for the High Court to make its judgment on the facts.”
Charlie has been diagnosed with mitochondrial depletion syndrome, a rare genetic disease believed to affect just 16 children in the world. The disease causes progressive muscle weakness and can cause death in the first year of life.
In recent weeks, Charlie’s case has drawn international attention due to the various legal battles that his parents, Chris Gard and Connie Yates, have fought in an attempt to save their son’s life.
Charlie’s parents had initially sought to take their son to the United States for the experimental treatment. They had raised more than $1 million to cover the costs of travel and medical expenses.
However, the hospital sought to block their request, citing his poor quality of life. Britain’s High Court agreed, saying that the experimental therapy could cause suffering and would only prolong the process of dying. It would be in Charlie’s best interest to be removed from life support, the court said.
His parents responded that even a small chance of success was worth pursuing, and said that even if their son could not live, they hoped that taking part in the experimental trial could provide the research that would help other children with his condition live in the future.
The European Court of Human Rights rejected an appeal from Charlie’s parents, who were also denied their request to take their son home from the hospital to die.
Both the Vatican pediatric hospital and Pope Francis have expressed their support for Charlie.
“The Holy Father follows with affection and emotion the story of Charlie Gard and expresses his own closeness to his parents,” read a July 2 statement issued by Vatican spokesman Greg Burke.
“He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”
On June 30, the day the Charlie’s life support was initially scheduled to be disconnected, the Pope also used his Twitter account to send a clear pro-life message in the infant's favor:
“To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”