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Q&A: What we know about the Charlie Gard case

As his parents end their court action to continue treatment, we look back on Charlie’s fight so far.

The parents of Charlie Gard have ended their court action as they tried to take their terminally ill son to the United States for treatment.What condition does Charlie have?

Charlie has been treated in Great Ormond Street Hospital in London (Family handout/PA)

The youngster was born a healthy baby but doctors discovered he had a rare inherited disease called infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). His particular form of the disease is caused by mutations of the RRM2B gene.

How does the disease affect Charlie?

The disease means patients have a decreased amount of the cells responsible for respiration and energy production in muscle, liver and brain tissues, causing weakness, encephalopathy, seizures and liver failure, according the the NHS Rare Mitochondrial Disorders Service. He cannot move his arms or legs and also has congenital deafness and a severe epilepsy disorder. Charlie can breathe only through a ventilator and has been at Great Ormond Street Hospital for Children (GOSH) in London since October 11 last year.

Why did Charlie’s parents seek legal intervention?
Charlie Gard's parents Chris Gard and Connie Yates arrive at the Royal Courts of Justice in London (Jonathan Brady/PA)

Chris Gard and Connie Yates, who are in their 30s and come from Bedfont, west London, wanted 11-month-old Charlie to undergo a therapy trial in America. GOSH applied to the courts to end treatment and block his parents’ wishes to take their son to the US for the experimental therapy. Specialists at GOSH said the therapy proposed by a doctor in America is experimental and would not help. Charlie’s parents had asked European court judges in Strasbourg, France, to consider their claims after losing battles in the High Court, Court of Appeal and Supreme Court in London but Strasbourg judges refused to intervene.

What therapy was being offered in America and would it have worked?

Following a crowdfunding campaign which raised the £1.3 million needed, Charlie’s parents hoped a doctor at a US hospital could treat him with nucleoside therapy. GOSH said nucleoside therapy is not intended to be a cure and would not improve Charlie’s quality of life, but his parents were told it had worked for other children with different conditions. Doctors told the High Court it was “very unlikely” that the little boy would improve with the treatment, which has never been tried on a patient with his exact condition. High Court judge Mr Justice Francis said treating Charlie with nucleoside therapy would be “unknown territory” and ruled that medics could withdraw all treatment except end-of-life care because it was in Charlie’s “best interests”.


From Belfast Telegraph