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Judicially decided the fate of 11-month-old baby suffering from a rare disease

This week it became known that ended a legal process that decided the fate of 11-month-old Charlie Garda, who shortly after birth was diagnosed with a form of depletion syndrome mitochondrial DNA.

This is a rare genetic disorder caused by a mutation of the gene Tk2, affects the brain, muscles and internal organs, said «jellyfish». Charlie can’t breathe, he’s also on the affected organs of hearing and sight because of the disease of his cornea could not develop normally, he can’t keep the eyelids open. From birth it is connected to devices of artificial life-support.

Charlie Gard was born 4 August 2016 in the family of a British Chris Garda, Connie Yates. Carriers of the affected gene turned out to be both parents, but they didn’t know about it until I passed the exams because of a diagnosis of the son.

Modern medicine does not know ways of treatment of the syndrome of depletion of mitochondrial DNA. The doctors could only alleviate the condition of a child placed in the intensive care unit of the London hospital Great Ormond Street Hospital, and keep him alive.

Charlie’s parents insisted to carry it to one of the American private clinics to undergo an experimental course of nucleoside therapy. The effectiveness of this method, used for the treatment of HIV patients, in case Charlie is still difficult to assess. But there is evidence that it has helped one child in the US, and this child’s parents spoke in support of the family Gard.

January 30, 2017 Chris Gard and Connie Yates has launched a crowdfunding campaign to raise funds for son’s treatment — it was attended by more than 83 thousand people, and in total managed to collect more than 1.3 million pounds. But to use them Gard Yates failed: British doctors found that sending a kid to the experimental treatment does not make sense and should be allowed to die with dignity.

According to the official statement of the hospital, its personnel (and invited experts) is considered as a nucleoside analog therapy, and other potential treatment options boy – but came to the conclusion that it will not be able to improve the quality of life. One of the reasons for this decision was that in the brain of a child, according to experts, has already occurred irreversible changes at the cellular level. British doctors agreed that to carry Charlie Garda for treatment in USA is inappropriate, the child should be transferred to the Department of palliative care. They also point out that this was a very difficult decision but their challenge was to act in the best interests of the child, not the parents.

Mother and Charlie’s father tried several times to appeal the decision in court, but London’s High court, appeal court and Supreme court of the United Kingdom left medical regulation in force. Point in this litigation has put the European court of human rights: on June 27 it rejected the appeal of Chris Como and Connie Yates, relying on previous judgments and expertise.

Judicially decided the fate of 11-month-old baby suffering from a rare disease 05.07.2017

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