LONDON, ENGLAND — The parents of Charlie Gard, the 11-month-old boy in the middle of an international debate over the right to life, stormed out of a London courtroom on Thursday after arguing with a judge over the boy’s fate.
Gard, who suffers from mitochondrial depletion syndrome, an often terminal genetic disorder, has been receiving treatment at a London hospital for the past several months. Physicians at the hospital, revered as one of the best children’s hospitals in the world, have argued that the boy, who can not see, move or breathe without the aid of life support, has exhausted their efforts and should be removed from his ventilator and allowed to die naturally.
Charlie’s parents, Chris Gard and Connie Yates, believe that experimental treatment available in the U.S. and Italy for the condition offers a 10 percent chance of improving the boy’s quality of life and reducing the brain damage he has sustained as a result of his illness (http://www.bbc.com/news/uk-england-london-405932860).
The boy’s parents filed an emergency petition with the Royal Courts of Justice in London for a hearing to request permission to take their son out of the U.K. for experimental treatment. Counsel for the hospital, who argues that doing so would be “cruel and inhumane” treatment of the boy argued that they, not the boy’s parents, have the ultimate right to determine what course of treatment, or in this case, non treatment, is in the baby’s best interests.
“A world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which [Great Ormond Street Hospital ] treats its child patients,” a spokesperson for the hospital argued before the court.
During the hearing, Chris Gard punched a table, while his wife said: “We said he’s not in suffering and in pain. If he was we wouldn’t be up here fighting for that!”
Frustrated, the boy’s parents stormed out of the hearing, only to return a short time later.
A New York-based expert on mitochondrial depletion syndrome gave testimony to the court via satellite – in which he said he believes an experimental drug available in the U.S., pending approval of the FDA – offers a chance of improving the boy’s condition.
The expert told the judge he was willing to come to London to examine the boy, should the court permit it.
Gard’s case gained international spotlight after both Pope Francis and President Donald Trump spoke out on behalf of the boy’s right to seek alternative treatment and offered to help Charlie’s parents in any way they possibly could.
Both New York Presbyterian Hospital and Columbia University Irving Medical Center have offered to take in the infant should the current “legal hurdles” be cleared and should the medications that Charlie requires “receive emergency approval from the FDA for an experimental treatment as appropriate.”
A petition asking the court to give the boy’s parents permission to move his care to the U.S. has just hit the 500,000 mark (http://metro.co.uk/2017/07/13/charlie-gard-petition-hits-500000-signatures-as-parents-fight-for-his-life-6777406/).
A decision by the London court is expected by the end of the week.