Worldwide support mounts for 11-month-old boy
By Dave Andrusko
The same judge who ruled in April that it was in little Charlie Gard’s “best interest” to remove his ventilator and die told Charlie’s parents today they have until Wednesday to present “fresh evidence” that their 11-month-old son should receive experimental treatment.
UK High Court Judge Nicholas Francis set a new hearing for this coming Thursday.
The hearing was highly charged with Charlie’s parents, Connie Yates and Chris Gard, struggling to contain their emotions. The Associated Press reported.
Charlie’s parents were overcome with emotion during the hearing. At one point, the baby’s father, Chris Gard, yelled at a barrister representing the hospital: “When are you going to start telling the truth?”
The baby’s mother, Connie Yates, added: “It’s really difficult.”
Asked by the parents’ attorney to allow another judge to hear the case, Judge Francis responded, “I did my job,” adding. “I will continue to do my job.”
Judge Francis previously said it would take something “dramatic and new” to make him change his mind.
Charlie is very ill. He has an exceptionally rare and debilitating chromosomal condition –encephalomyopathic mitochondrial DNA depletion syndrome (MDDS)–in which his cells cannot replenish essential energy. However a natural compound, orally administered, has shown some success as a treatment in the United States. Chris and Connie have been working feverishly since January to get their son to the U.S. to receive that alternative treatment.
New York-Presbyterian Hospital/Columbia University Medical Center and one other unnamed medical facility have offered to treat Charlie, either as an inpatient or by shipping the nucleoside therapy drug to GOSH.
Between April and June, rulings from the European Court of Human Rights, and three UK courts, supported the “futile care” assertion of the Great Ormond Street Hospital (GOSH) that Charlie’s very “existence” there was “inhuman” and it was in his “best interests” that life-support be discontinued.
GOSH could have unplugged Charlie’s respirator and given only palliative care beginning last week, but thanks to a world-wide flurry of attention, the hospital took the face-saving gesture Friday of calling on Judge Francis to hold a hearing to consider what it called “fresh evidence” which the hospital made clear last week–and this afternoon–wasn’t new in GOSH’s opinion.
What seemed inevitable–the withdrawal of Charlie’s ventilator –became more problematic thanks to the intervention of Pope Francis and President Donald Trump.
The interest of the Pope and US President Donald Trump in Charlie’s case has “saved his life so far,” his mother has said.
Ms Yates told BBC Radio 4’s Today programme: “Yeah, they have saved his life so far. It turned it into an international issue.
“There are a lot of people that are outraged by what is going on. We have got new evidence now so I hope the judge changes his mind.”
She said that “sometimes parents are right in what they think” and it is not simply that they do not want to switch off life support.
She said the family now have seven specialist doctors – two from the US, two from Italy, one from England and two from Spain – who are supporting them.
She added: “We expect that structural damage is irreversible, but I have yet to see something which tells me my son has irreversible structural brain damage.”
There have been and are multiple additional efforts to raise public consciousness about Charlie and provide other options, none of which the hospital has shown the slightest interest in.
Beyond the peaceful demonstrations, evidences of solidarity with Francis, a torrential outpouring of twitter support there’s also been this:
- Yesterday Connie and Chris presented the hospital with a 350,000-signature petition calling for him to be allowed to travel to the US for treatment. When they did, Connie said, “He’s our son, he’s our flesh and blood. We feel that it should be our right as parents to decide to give him a chance at life.” She added, “There is nothing to lose, he deserves a chance.”
- More than $1.7 million has been raised online to help defray costs.
- Republican congressmen Brad Wenstrup and Trent Franks will introduce a bill this week calling for Charlie and his parents to be granted permanent residence in the United States.
- The Vatican’s Bambino Gesu Children’s Hospital has also offered to treat Charlie. Its offer was rejected.