Parents of Terminally Ill Baby Have 48 Hours to Find Evidence Experimental Treatment Could Help

By Aimée Lutkin  |  July 10, 2017 | 8:40pm
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Charlie Gard is a terminally ill baby who cannot see or hear with significant brain damage that keeps him from breathing, eating or moving on his own. Charlie’s parents have been forbidden from taking him to the US for experimental treatment, based on evidence from the hospital and doctors, a decision upheld by the European court of human rights. Now, after interference fro the Pope and Donald Trump, his case is being reopened.

The Guardian reports that on Monday, Charlie’s parents, Connie Yates and Chris Gard, were given 48 hours to produce “drastic new evidence” that sending him to the US would help Charlie. The court will reconvene to hear the evidence on Thursday.

Justice Nicholas Francis, who rejected the parents’ requests to move Charlie in April, says he would be “delighted” to change his mind, but added, “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.”

The Great Ormond Street Hospital applied for the new hearing after receiving a letter signed by seven doctors from the Vatican children’s hospital asking them to reconsider, and a letter from the family’s solicitor.

Charlie’s condition is caused by a rare genetic mitochondrial condition, and a US doctor performing “nucleoside treatment” has said there is a 10% chance of it working on Charlie, at a conservative estimate. This will, of course, not cure or reverse the brain damage his condition has already caused him to suffer.

Meanwhile, two US Republicans, Reps. Brad Wenstrup (OH) and Trent Franks (AZ), have proposed giving Gard permanent residency in the US for his treatment. Both are in favor of the Republican health care bill that would strip insurance from millions of American citizens.

“Only the family, the doctors treating Charlie, and now the legal teams involved, know the details of complex issues that define his situation,” said Dr. Neena Modi, president of the Royal College of Paediatrics and Child Health, in a statement to CNN. “These issues—unknown to us and all those voicing opinions—will have been considered very carefully in reaching any decision. This is why interventions by external agencies or individuals, no matter how well-intended, are unhelpful.”

 
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