On June 28, 2017, the decision rendered by the European Court of Human Rights (ECHR) confirms the British courts’ ruling, thus authorizing withdrawal of life-support for Charlie Gard, a 10-month-old infant with a mitochondrial disease.

Born on 4 August 2016, Charlie was diagnosed with a very rare and severe mitochondrial disease called mitochondrial DNA depletion syndrome (“MDDS”). The disease is caused by mutations in the RRM2B gene, without any realistic prospect of improvement. The hospital requested for the British courts to declare whether they could legally stop artificial respiration and only give palliative care. The parents disagreed and pleaded to know “whether it would be in their child’s best interest to have experimental therapy from USA administered”.  The British judges have ruled in favor of allowing the hospital to stop artificial respiration, judging that Charlie was being exposed to continued and unrelievable pain, suffering and distress.  According to the same courts, undergoing experimental treatment would offer no benefit for the child.

His parents, Chris Gard and Connie Yates, filed a complaint with the ECHR based on articles 2, 5, 6 and 8. For the parents, the British hospital’s decision constituted unlawful interference in their private family life, as well as violating the right to life. On June 9, the Court granted an interim measure for the child to be maintained on life-support until a decision was reached.

In the Court’s ruling, it was mentioned that the States have a certain discretionary power, with jurisdiction for elaborating regulatory guidelines to govern “access for experimental treatment as well as for discontinuing life-supporting care”, if the latter is compatible with the Rights of the Convention. The Court also took into account the decisions from the in-house court proceedings, and deemed the objective to be “clear and detailed, thus enabling the conclusions to be substantiated in a meaningful manner.”

Thus the ECHR upheld the British courts’ recommendations, and little Charlie must remain in the UK, where no modifications have been made in his treatment for the moment. The next step planned is to discontinue the child’s artificial respiration. Nevertheless, the hospital promises that nothing will be done immediately, and any change in Charlie’s care and future treatment will involve “careful planning and discussion”.

This case looks much like that of little Marwa, from Marseilles, where the French court ruled in favor of maintaining healthcare.