Genetic DNA disease victimDied when: 0 years 358 days (11 months)
Star Sign: Leo
The Charlie Gard case was a best interests case in 2017 involving Charles Matthew William "Charlie" Gard (4 August 2016 – 28 July 2017), an infant boy from London, born with mitochondrial DNA depletion syndrome (MDDS), a rare genetic disorder that causes progressive brain damage and muscle failure.
MDDS has no treatment and usually causes death in infancy.The case became controversial because the medical team and parents disagreed about whether experimental treatment was in the best interests of the child.
The case has been classified by legal academics as a 'stigmata case', cases that "are part of the meditation of a culture upon itself." In October 2016, Charlie was transferred to London's Great Ormond Street Hospital (GOSH), a National Health Service (NHS) children's hospital, because he was failing to thrive and his breathing was shallow.
He was placed on mechanical ventilation and MDDS was diagnosed.A neurologist in New York, Michio Hirano, who was working on an experimental treatment based on nucleoside supplementation with human MDDS patients was contacted.
He and GOSH agreed to proceed with the treatment, to be conducted at GOSH and paid for by the NHS.
Hirano was invited to come to the hospital to examine Charlie but did not visit at that time.In January, after Charlie had seizures that caused brain damage, GOSH formed the view that further treatment was futile and might prolong suffering.
They began discussions with the parents about ending life support and providing palliative care.Charlie's parents still wanted to try the experimental treatment and raised funds for a transfer to a hospital in New York.
In February 2017, GOSH asked the High Court to override the parents' decision, questioning the potential of nucleoside therapy to treat Charlie's condition.
The British courts supported GOSH's position.The parents appealed the case to the Court of Appeal, the Supreme Court and the European Court of Human Rights.
The decision of the court at first instance was upheld at each appeal.In July 2017, after receiving a letter signed by several international practitioners defending the potential of the treatment and claiming to provide new evidence, GOSH applied to the High Court for a new hearing.
Hirano visited Charlie at GOSH during the second hearing of the case at the request of the judge.After examining scans of Charlie's muscles, Hirano determined it was too late for the treatment to help Charlie and the parents agreed to the withdrawal of life support.
GOSH maintained its position throughout that Charlie's condition had deteriorated by January to the extent that the proposed experimental treatment was futile.
The second hearing at the High Court, which had been arranged to hear and examine the new evidence then became concerned with the arrangements for the withdrawal of life support.
On 27 July, by consent, Charlie was transferred to a hospice, mechanical ventilation was withdrawn, and he died the next day at the age of 11 months and 24 days.
The case attracted widespread attention in Britain and around the world, with expressions of concern and assistance offered by figures including U.S.
President Donald Trump and Pope Francis.At the time of Charlie's death, The Washington Post wrote that the case "became the embodiment of a passionate debate over his right to live or die, his parents' right to choose for their child and whether his doctors had an obligation to intervene in his care".