Parents of Child with Rare Genetic Condition Fight for His Life

A court may wind up determining the fate of this disabled baby boy — ethicists are alarmed

Parents of a disabled young baby in Great Britain are fighting to keep their child on life support — and hope to entrust him to the care of doctors in the United States.

Charlie Gard, just 10 months old, has a rare medical condition called mitochondrial depletion syndrome, which causes progressive muscle weakness. Since October 2016, he has battled for his life in an intensive care unit in London.

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“Charlie’s parents have raised more than $1.6 million to help seek experimental treatment for him in the U.S,” as the Catholic News Agency reported. “Their decision faced legal challenge from Great Ormond Street Hospital, where he is being treated.”

Connie Yates and Chris Gard, the child’s parents, in an effort to save their son are interested in a treatment that has not been tried on humans before. Apparently fewer than a couple dozen people have ever had Charlie Gard’s genetic condition. The baby has suffered brain damage and is unable to move — which is why the hospital argues his life support should end.

“The hospital’s experts argued in court that long-term life support should be withdrawn from the baby because his quality of life was so poor,” CNA reported.

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But others have a serious problem with that. “It seems to me completely wrongheaded that the state should be stepping in here when the decision that the parents are making is really aimed at the best interests of the child,” Dr. Melissa Moschella, a Catholic University of America philosophy professor, told the publication.

“We love our son with every ounce of our being and we’ve got his best interests in mind — we’re not horrible people,” his mother said on “Good Morning Britain.”

The European Court of Human rights has not yet made a decision on this case. For now, the baby’s hospital care will continue.

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“European judges have ordered doctors at Great Ormond Street Hospital to continue providing life support to Charlie to give the couple’s lawyers time to submit detailed legal arguments,” the Daily Mail reported.

The U.K.’s Supreme Court rejected his parents’ appeal to seek treatment in the United States.

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“It is … hugely difficult for any clinically trained professional to be asked to treat a child who has no chance of survival or even improvement in his quality of life,” a spokesperson for Great Ormond Street Hospital said earlier this month.

Yet Moschella told CNA there should only be legal intervention that goes against the wishes of parents in cases “when there is a clear case of abuse or neglect or some significant threat to the public order … Neither of those situations is the case here.”

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