Infant Charlie Gard dies after parents' futile pleas

"His parents...fought numerous legal battles for their son's life and raised about $1.7 million for an experimental treatment in the United States that he never was permitted to receive." BPNews

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Jim's picture

No, there wasn’t. The specific variant of mitochondrial DNA depletion disease which Charlie Gard has/had, RRM2B, affects both muscle and brain, and has never been effectively treated, much less reversed or “cured”. There is no known cure for mitochondrial disease, though there are treatments of varying efficacy for some variants. The “treatment” people thought was being offered by Professor Michio Hirano is not only untested on humans, it’s untested on mice, as the judge noted — in a passage of his July judgment in which he appears supremely pissed off with Prof Hirano for having strung out the court and especially the parents for more than six month since January (when Gt Ormond St invited him to come and examine Charlie, an invitation which he never took up)

Testing in mice (gene-spliced to have the same condition) is standard procedure for testing any therapy before it’s tried on humans. You might say “but what harm could it do to skip the mouse step?” Besides the question of the difficulty of preparing it for a human, what if it tore apart his tissues, or had some other vicious side effect? Are you prepared to OK what might amount to torture for a dying child, instead of palliative care? This becomes a crucial point.

Observation: People die. It's not euthanasia to not treat a disease that kills!

... withdrawing ventilation and instead offering palliative (pain relief) care is not in itself a death sentence. This probably seems counterintuitive, so I’m grateful to Peter Newman, a British lawyer, who pointed out in a couple of tweets that withdrawing the ventilation would not be the cause of death. The cause of death is the MDDS. The ventilation might be artificially keeping him alive, but a doctor writing a death certificate would not write “withdrawal of artificial ventilation” as the primary cause, but something like “respiratory and heart failure due to inherited disorder”.