Charlie will be examined early next week, in London, by Dr. Michio Hirano
, a neurologist at New York’s Columbia University Medical Center. Hirano is developing an experimental therapy that has 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 in August with mitochondrial DNA depletion syndrome, a progressive disease that causes muscle weakness and loss of motor skills, leaving those who have it unable to stand, walk, eat, talk and eventually breathe. Charlie will die from his illness, his doctors have said.
His parents, Chris Gard and Connie Yates, successfully raised money in hopes of bringing their son to the US for an experimental treatment, but doctors at the Great Ormond Street Hospital in London, where Charlie has been since October, argued in court that it was not in their patient’s best interest.
After a series of hearings and appeals in several courts, the European Court of Human Rights decided on June 30 not to intervene in the case, which upheld a British Supreme Court decision that the hospital could discontinue life support to Charlie and he could not be transferred.
The emotional case went to the UK High Court this week after the hospital requested a new hearing to consider “new evidence relating to potential treatment for his condition.”
On Thursday, Hirano told Justice Nicholas Francis that the baby’s MRI scan did not necessarily indicate structural damage to the brain. He said there was an “11% to 56% chance of clinically meaningful improvement” in muscular function with the proposed treatment. Hirano added that keeping Charlie on a ventilator would not cause him harm because he did not seem to be in any significant pain.
The Great Ormond Street Hospital told the court their position remains unchanged, that every medical treatment option had already been explored, and that any experimental treatment would be unjustified.
In addition to evaluating Charlie, Hirano will meet with doctors and others, on Monday and Tuesday, who have been caring for him. After much debate in court on Friday over whether Charlie’s parents will be present for this, the Judge announced that Yates will be allowed to attend. An individual, who will remain anonymous by court order, will chair the meetings.
Francis will then consider information from Hirano to inform a decision from the court, which he has said he hopes to render by July 25.
According to the barrister presenting to the court on Charlie’s behalf, Charlie’s court-appointed guardian has been to see him this week and is concerned about the deterioration in his physical condition.