Who Is Charlie Gard, What Is Mitochondrial Disease And Why Was There A Legal Battle?

(Telegraph) Who is Charlie Gard, what is the mitochondrial disease he suffers from and why was there a legal battle?

Charlie Gard’s parents were spending their last days with their baby son, having been given more time before his life support is turned off.

Chris Gard and Connie Yates wanted the 10-month-old, who suffers from a rare genetic condition and has brain damage, to undergo a therapy trial in the US but lost their final legal battle on Tuesday.

The baby’s life support was due to be turned off on Friday, the couple had said, but they are now expected to spend a few more days together, the Daily Mail said.

Here is everything you need to know about the case.

Who is Charlie Gard?

Charlie is a 10-month old patient in intensive care at Great Ormond Street Hospital (GOSH) in London.

On August 4, 2016, he was born a “perfectly healthy” baby at full term and at a “healthy weight”. After about a month, however,  Charlie’s parents noticed that he was less able to lift his head and support himself than other babies of a similar age.

Doctors discovered he had a rare inherited disease – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).

The condition causes progressive muscle weakness and brain damage.

In October, after he had became lethargic and his breathing shallow, he was transferred to the Great Ormond Street Hospital.

Why was there a legal fight?

Charlie’s parents wanted to take him to see specialists in the USA, who had offered an experimental therapy called nucleoside.

A crowdfunding page was set up in January to help finance the therapy.

But doctors at GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life.

When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision. This is what happened in Charlie’s case.

What were the stages of the legal battle?

March 3: Great Ormond Street bosses asked Mr Justice Francis to rule that life support treatment should stop.

The judge was told that Charlie could only breathe through a ventilator and was fed through a tube.

April 11: Mr Justice Francis said doctors could stop providing life-support treatment after analysing the case at a hearing in the Family Division of the High Court in London

He concluded that life-support treatment should end and said a move to a palliative care regime would be in Charlie’s best interests.

May 3: Charlie’s parents then asked Court of Appeal judges to consider the case.

May 23: After analysing the case, three Court of Appeal judges dismissed the couple’s appeal two days later.

June 8: Charlie’s parents then lost their fight in the Supreme Court. Charlie’s mother broke down in tears and screamed as justices announced their decision and was led from the court by lawyers.

June 20:  Judges in the European Court of Human Rights started to analyse the case after lawyers representing Charlie’s parents make written submissions.

A European Court of Human Rights spokeswoman said the case would get “priority”. “In light of the exceptional circumstances of this case, the court has already accorded it priority and will treat the application with the utmost urgency,” she added.

June 27: On Tuesday, European court judges refused to intervene. A Great Ormond Street spokeswoman said the European Court decision marked “the end” of a “difficult process”.

She said there would be “no rush” to change Charlie’s care and said there would be “careful planning and discussion”.

What did Charlie’s parents argue?

Richard Gordon QC, who led Charlie’s parents’ legal team, had told Court of Appeal judges that the case raised “very serious legal issues”.

“They wish to exhaust all possible options,” Mr Gordon said in a written outline of Charlie’s parents’ case.

“They don’t want to look back and think ‘what if?’. This court should not stand in the way of their only remaining hope.”

Mr Gordon suggested that Charlie might be being unlawfully detained and denied his right to liberty.

He said judges should not interfere with parents’ exercise of parental rights.

Lawyers, who represented Charlie’s parents for free, said Mr Justice Francis had not given enough weight to Charlie’s human right to life.

They said there was no risk the proposed therapy in the US would cause Charlie “significant harm”.

What did GOSH argue?

Katie Gollop QC, who led Great Ormond Street’s legal team, suggested that further treatment would leave Charlie in a “condition of existence”.

She said therapy proposed in the USA was “experimental” and would not help Charlie.

“There is significant harm if what the parents want for Charlie comes into effect,” she told appeal judges. “The significant harm is a condition of existence which is offering the child no benefit.”

She added: “It is inhuman to permit that condition to continue.”

Ms Gollop said nobody knew whether Charlie was in pain.

“Nobody knows because it is so very difficult because of the ravages of Charlie’s condition,” she said.

“He cannot see, he cannot hear, he cannot make a noise, he cannot move.”

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