<unk> s Matthew William<unk>  was born on 4 August 2016, at full term and normal weight, to Christopher<unk> , a postman, and Constance Yates, a carer for young people with learning difficulties, both of Bedfont, west London. He seemed to develop normally at first, but his parents noticed after a few weeks that he was less able to lift his head, and they took him to his GP. On 2 October 2016, they reported that he was being breastfed every 2–3 hours but was not gaining weight. He was fed a high-calorie formula through a nasogastric tube, an ECG was carried out, and a cranial MRI scan was performed on 7 October.Part of Great Ormond Street Hospital, London On 11 October,<unk>  was taken to Great Ormond Street Hospital (GOSH) and put on a mechanical ventilator, because his breathing had become shallow. By November, the doctors suspected that he had mitochondrial DNA depletion syndrome (MDDS), a set of rare diseases caused by mutations in genes essential for mitochondria to function. This diagnosis was confirmed by a genetic test in mid-November, which found that he had two mutated versions of the gene coding for the RRM2B protein. The gene for RRM2B is in the cell nucleus; the protein it codes is necessary for generating nucleosides that are used to make deoxyribonucleic acid (DNA) in mitochondria. The mitochondria fail in people lacking a functional version of this protein, causing brain damage, muscle weakness (including of the muscles used to breathe) and organ failure, and usually leading to death during infancy. Only 15 other cases of MDDS caused by mutations in RRM2B have been recorded. , there was only one experimental treatment for MDDS based on nucleoside supplementation, used on mice and human patients carrying a mutation in a different gene (TK2), which also impairs the synthesis of nucleosides in mitochondria causing a less severe form of MDDS. The hospital's ethics committee advised in November 2016 that<unk>  should not be given a tracheostomy. In mid-December, he began having persistent seizures as his brain function deteriorated. He had become deaf, his heart and kidneys were failing, and he could no longer breathe or move independently. It was unclear whether he could feel pain. Experimental nucleoside treatment Neurological Institute of New York, Columbia University Medical Center In December 2016, Michio Hirano, chief of the Division of Neuromuscular Disorders at Columbia University Medical Center, and an attending neurologist at New York–Presbyterian Hospital, who had worked on nucleoside therapy in collaboration with researchers in Italy, Spain and Central America, administering the therapy to 18 human patients, was contacted.<unk> 's records were sent electronically to Hirano on 30 December, and he and a member of the GOSH medical team discussed the case by telephone. Both doctors agreed that the experimental treatment was unlikely to help if there was irreversible brain damage. Hirano and the GOSH medical team continued to email and discuss the treatment by telephone. Hirano said there was a "theoretical possibility" that the treatment would provide some benefit, but that he needed a baseline MRI to rule out "severe brain involvement". An MRI was performed and seemed to show no structural damage to the brain. On 9 January 2017, notes kept by GOSH doctors recorded that the team intended to attempt the nucleoside treatment at GOSH in the next few weeks. One of the doctors applied to the hospital's ethics committee for approval. A committee meeting was scheduled for 13 January, and<unk>  was provisionally scheduled for a tracheostomy on 16 January. GOSH invited Hirano to examine him in January, but he did not examine<unk>  until July. On 9 or 10 January,<unk>  began having epileptic seizures, which continued until 27 January. These were deemed likely to have caused epileptic encephalopathy (brain damage), and the 13 January ethics committee meeting was postponed. On 13 January, the GOSH doctors informed<unk> 's parents that the brain damage had made the experimental treatment futile, and in light of the risk that he was suffering, they withdrew their support for it. Termination of life support proposed and opposed GOSH began discussing with the parents the ending of life support and the provision of palliative care. By this time, relations between the parents and the doctors had deteriorated. One GOSH doctor emailed another: "Parents are spanner in the works. Recent deterioration with worsening seizures means trial is not in his best interests." The email emerged in the subsequent court case; the judge said that he understood the distress it had caused the parents, but that it was important to view the email in the context of notes passed between consultants about<unk> 's best interests. The parents disagreed with the doctors at GOSH; they wanted to take him to New York to receive the nucleoside treatment.
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