wnol.info July 26 2017


Baby Charlie Denied Life by British Health System, EU Courts

July 26 2017, 10:31 | Rex Rios

Devastating: Charlie Gard, the baby at the center of a fierce legal battle for alternative treatment options, is likely to sadly die today

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Charlie was born in August with a rare genetic condition called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS, according to court records. This condition causes progressive muscle weakness and brain damage. His likelihood of survival is slim.

Baby Charlie Gard will remain on life support in London until the European Court of Human Rights decide whether he should undergo an experimental medical treatment in the US.

His parents wanted to bring him to the United States for experimental nucleoside treatment, but the administrators and doctors at Great Ormond Street Hospital for Children denied the request. The parents said hospital personnel told them they could not arrange transport for Charlie and, when the parents offered to pay for it, the parents said the hospital personnel told them that was not an option.

The ECHR noted that the United Kingdom courts had concluded that "it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm".

While the European Court initially granted a three-week extension to keep the infant's life support on until July 10, that extension was revoked when the decision of the court arrived on Tuesday.

Doctors at Great Ormond Street Hospital are scheduled to take him off life support on Friday.

Specialists at Great Ormond Street Hospital (GOSH) said the therapy was experimental and would not help.

The couple even shared a heartbreaking photo of them lying with Charlie and said that they were spending their last night with Charlie.

On Facebook, the Charlie's parents said that they were "heartbroken" and that they were aghast that they were not permitted to choose when or where their son would die. Doctors said his life support treatment should be replaced with palliative care so Charlie could "die with dignity".

Despite his parents' extreme objections and wishes to bring their son to the US for experimental treatment.

As BBC reports, the parents of Charlie Gard claimed to be "massively let down" by the hospital's refusal to let them take their son home, as well as the fact that the quick timetable to remove the baby from life support would prevent many of his loved ones from saying their final good-byes. "This is a very distressing situation for Charlie's parents and all the staff involved and our focus remains with them".

However, the court in Strasbourg, France, ultimately ruled that the imperative to act in Charlie's best interests and not prolong his suffering outweighed the vanishingly small likelihood of successful treatment. In October, he was transferred to the Great Ormond Street Hospital in London.



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