It has been a heartbreaking legal battle that has captured international attention and drawn offers of support from Donald Trump and the Pope.
Now, Charlie Gard has died after his life-support was withdrawn soon after he was moved to a hospice, denying his parents their “final wish” for him to spend his final hours at home.
The little boy‘s parents, Chris Gard and Connie Yates, had asked for more time with their son after he was transferred from Great Ormond Street Hospital, but High Court judge Mr Justice Francis said doctors could stop providing treatment shortly after 11-month-old arrived at the hospice.
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, Chris Gard and Connie Yates, 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.