There is a 10 percent chance to improve 11-month-old Charlie Gard’s condition using an experimental therapy said an American doctor. However, doctors at Great Ormond Street Hospital (GOSH), where Charlie is currently on life support, said the baby’s rare genetic disorder and server brain damage was “irreversible, irreparable.” Despite this, a British judge ruled Friday for Dr. Michio Hirano, a neurologist at New York’s Columbia University Medical Center, to examine Charlie in London next week. Hirano is developing an experimental therapy that has already been used on at least one American patient with a similar but less severe mitochondrial disease. He specializes in myopathies and other neuromuscular diseases.
Charlie was born with mitochondrial DNA depletion syndrome, an extremely rare genetic condition that left him brain damaged and unable to breathe unaided. He cannot open his eyes or move his arms or legs, and his heart, liver, and kidneys are also affected. His doctors said he will die from his illness. Hirano said on Thursday the baby’s MRI scan indicated “disorganization of brain activity and not major structural brain damage.” He added that there was an “11% to 56% change of clinically meaningful improvement” in muscular function with the proposed treatment. The European Court of Human Rights ruled on June 30 that the hospital could discontinue life support to Charlie and he could not be transferred.
However, the hospital requested a new hearing to consider “new evidence relating to potential treatment for his condition,” and the case went to the U.K. High Court this week. Doctors at GOSH told the court that their position is unchanged, that every medical treatment option had already been explored, and that any experimental treatment would be unjustified. But his parents have already raised more than $1.7 million to take their son to the United States for experimental treatment.
Hirano will also be meeting with the doctors and others who have been caring for Charlie. The High Court will then consider the information Hirano provides and determine a decision by July 25. Donald Trump also welcomed Charlie to the United States with a tweet earlier this month.
If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.
— Donald J. Trump (@realDonaldTrump) July 3, 2017