Parents' request for terminally ill little boy to die at home refused

Glen Mclaughlin
July 1, 2017

"Baby Charlie", as he came to be known, can not breathe on his own, has seizures, and suffered severe brain damage as a result of his disease. He has severe brain damage and progressive muscular weakness, and can not move or breathe unaided.

There is no known cure, but his parents had hoped to try an experimental treatment in the USA and had raised the funds through crowdfunding efforts.

The video follows a decision of the European Court of Human Rights rejecting the parents' appeal to allow Charlie to undergo experimental medical treatment in the United States, ending the couple's lengthy legal battle.

But they claimed that Great Ormond Street Hospital (GOSH) - whose medics had argued that a therapy trial in the USA was experimental and would not help - denied them this request.

Charlie's case has gained attention online, raising almost 1.4 million pounds ($1.8 million) on GoFundMe to send him to the U.S.

But hours later, the hospital said in a statement that "together with Charlie's parents we are putting plans in place for his care and to give them more time together as a family".

Charlie Gard's life support will be switched off later today and the little angel will unfortunately die.

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His parents, Chris Gard and Connie Yates, made their final appeal to the Strasbourg court after their UK Supreme Court challenge failed.

According to the United Mitochondrial Disease Foundation, Charlie's disease is caused by a failure in the mitochondria, the cells that are responsible for making the majority of energy needed to sustain life.

Against his parents' wishes, baby Charlie will be taken off life support on Friday, June 30. The judge concluded that a palliative care regime would be in the best interests of baby Charlie. Charlie's parents disagreed with the hospital's conclusion, and that is exactly what they did.

Gard and Yates sought to overturn the ruling at the Court of Appeal, but Mr Justice McFarlane upheld the decision that taking Charlie to the USA would "expose Charlie to harm" with little hope of improving his condition.

However, Mr Justice Francis agreed with Great Ormond Street's assessment that the extent of Charlie's brain damage was so severe and irreversible that any treatment would be "potentially painful but incapable of achieving anything positive for him".

The parents said they begged the hospital to give them the weekend in order to allow family members to say goodbye.

Since there is a disagreement over the infant's medical care between the patient's guardians and the doctor attending to his condition, the final decision on what would be the best course of action for the child could be left up to the courts, according to the British Medical Association.

Other reports by MaliBehiribAe

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