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Charlie Gard case

Updated: 12/20/2025, 11:45:21 AM Wikipedia source

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. 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 then 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".

Infobox

Born
Charles Matthew William Gard(2016-08-04)4 August 2016London, UK
Died
(2017-07-28)28 July 2017 (aged 11 months 24 days)
Cause of death
Mitochondrial DNA depletion syndrome
Nationality
British
Parents
mw- Christopher Gard Constance Yates

Tables

Timeline of events · Legal proceedings
11 Oct 2016
11 Oct 2016
4 Aug 2016
11 Oct 2016
Charlie born
Charlie hospitalized with MDDS
mid-Dec 2016
mid-Dec 2016
4 Aug 2016
mid-Dec 2016
Charlie born
Charlie begins having seizures, indicating worsening condition
30 Dec 2016
30 Dec 2016
4 Aug 2016
30 Dec 2016
Charlie born
Hirano and GOSH discuss possible experimental treatment
mid-Jan 2017
mid-Jan 2017
4 Aug 2016
mid-Jan 2017
Charlie born
Worsening seizures indicate brain damage, cause GOSH staff to believe treatment is futile
30 Jan 2017
30 Jan 2017
4 Aug 2016
30 Jan 2017
Charlie born
Parents begin fundraiser for treatment
24 Feb 2017
24 Feb 2017
4 Aug 2016
24 Feb 2017
Charlie born
GOSH asks UK court to order change from ventilator to palliative care
11 April 2017
11 April 2017
4 Aug 2016
11 April 2017
Charlie born
UK court orders change from ventilator to palliative care
23 May 2017
23 May 2017
4 Aug 2016
23 May 2017
Charlie born
Court of Appeal dismisses parents' claim
8 June 2017
8 June 2017
4 Aug 2016
8 June 2017
Charlie born
Justices deny appeal to the Supreme Court
27 June 2017
27 June 2017
4 Aug 2016
27 June 2017
Charlie born
EU Court of Human Rights declines case
17 July 2017
17 July 2017
4 Aug 2016
17 July 2017
Charlie born
Medical experts, including Hirano, conclude treatment is futile
24 July 2017
24 July 2017
4 Aug 2016
24 July 2017
Charlie born
Parents formally withdraw opposition to palliative care
25 July 2017
25 July 2017
4 Aug 2016
25 July 2017
Charlie born
UK court affirms order to change from ventilator to palliative care
28 July 2017
28 July 2017
4 Aug 2016
28 July 2017
Charlie born
Charlie dies
4 Aug 2016
Charlie born
11 Oct 2016
Charlie hospitalized with MDDS
mid-Dec 2016
Charlie begins having seizures, indicating worsening condition
30 Dec 2016
Hirano and GOSH discuss possible experimental treatment
mid-Jan 2017
Worsening seizures indicate brain damage, cause GOSH staff to believe treatment is futile
30 Jan 2017
Parents begin fundraiser for treatment
24 Feb 2017
GOSH asks UK court to order change from ventilator to palliative care
11 April 2017
UK court orders change from ventilator to palliative care
23 May 2017
Court of Appeal dismisses parents' claim
8 June 2017
Justices deny appeal to the Supreme Court
27 June 2017
EU Court of Human Rights declines case
17 July 2017
Medical experts, including Hirano, conclude treatment is futile
24 July 2017
Parents formally withdraw opposition to palliative care
25 July 2017
UK court affirms order to change from ventilator to palliative care
28 July 2017
Charlie dies
· Summary of judgements
EWHC (Fam)
EWHC (Fam)
Court
EWHC (Fam)
Bench
Mr Justice Francis
Decision
Change ventilator to palliative care
Date
11 April
EWCA (Civ)
EWCA (Civ)
Court
EWCA (Civ)
Bench
Lord Justice Mcfarlane
Decision
Parents' appeal dismissed
Date
23 May
Lady Justice King
Lady Justice King
Court
Lady Justice King
Lord Justice Sales
Lord Justice Sales
Court
Lord Justice Sales
UKSC
UKSC
Court
UKSC
Bench
The Baroness Hale of Richmond (DP)
Decision
Parents' appeal denied
Date
8 June
The Lord Kerr of Tonaghmore
The Lord Kerr of Tonaghmore
Court
The Lord Kerr of Tonaghmore
Lord Wilson of Culworth
Lord Wilson of Culworth
Court
Lord Wilson of Culworth
ECHR (First Section)
ECHR (First Section)
Court
ECHR (First Section)
Bench
Linos-Alexandre Sicilianos (P)
Decision
Application inadmissible
Date
3 July
Kristina Pardalos
Kristina Pardalos
Court
Kristina Pardalos
Aleš Pejchal
Aleš Pejchal
Court
Aleš Pejchal
Krzysztof Wojtyczek
Krzysztof Wojtyczek
Court
Krzysztof Wojtyczek
Armen Harutyunyan
Armen Harutyunyan
Court
Armen Harutyunyan
Tim Eicke
Tim Eicke
Court
Tim Eicke
Jovan Ilievski
Jovan Ilievski
Court
Jovan Ilievski
Court
Bench
Decision
Date
EWHC (Fam)
Mr Justice Francis
Change ventilator to palliative care
11 April
EWCA (Civ)
Lord Justice Mcfarlane
Parents' appeal dismissed
23 May
Lady Justice King
Lord Justice Sales
UKSC
The Baroness Hale of Richmond (DP)
Parents' appeal denied
8 June
The Lord Kerr of Tonaghmore
Lord Wilson of Culworth
ECHR (First Section)
Linos-Alexandre Sicilianos (P)
Application inadmissible
3 July
Kristina Pardalos
Aleš Pejchal
Krzysztof Wojtyczek
Armen Harutyunyan
Tim Eicke
Jovan Ilievski

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