Rare Disease Report

Judge Tells Parents of Charlie Gard: Show Me the Data

JULY 10, 2017
James Radke
The fate of Charlie Gard remains on hold for 2 more days, following a court hearing Monday in London England. During the proceedings, Judge Nicholas Francis told Charlie’s parents to provide scientific proof that an experimental procedure they want to give their son has a chance of being effective.
Charlie Gard is an 11-month-old boy suffering from a rare mitochondrial DNA depletion disorder that has left him on life support machines to keep him alive. There are currently no approved treatments for these conditions and in most cases, the children progress in a similar manner that Charlie did (being born healthy then quickly deteriorating as muscle strength declines).
In April, the parents asked the hospital where he was being treated, Great Ormond Street Hospital, to release the boy to their custody so that they could take him to the United States for an experimental procedure. The court battle that ensued over that request favored the hospital who did not want to release the boy for ethical reasons (they said the risk of additional pain and deterioration to the boy outweighed the potential benefit of the experimental procedure). After numerous appeals to the courts, the decision remained as it was back in April – namely that the boy could not be released to the parents’ care for risk of unnecessary pain and discomfort to the child.
Today, after a worldwide outpouring of support (including support from Pope Francis and President Donald Trump), the judge from the original in April ruling met with the parents to possibly reexamine the decision and the judge told the parents they have until Wednesday to produce scientific evidence to support their claim the experimental treatment would possibly help Charlie. The parents’ lawyer told the court that an American doctor suggested that the experimental treatment has a 10% chance of working for Charlie. The Judge wants that in writing.
As the judge noted during the hearing today, he would be delighted to be able to change his mind about his decision in April but that would require some “drastic” new evidence for him to do so.
Judge Francis said during the hearing, “I have to decide this case not on the basis of tweets, not on the basis of what might be said in the press, or to the press.”
Be sure the follow the latest updates on this intriguing case (#charliegard) with Rare Disease Report on Facebook and Twitter.

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