The 10 month-old baby boy who has been at the center of furious fight for the right of his parents to determine the child’s fate, will have his life support terminated today.
The Daily Mail is reporting on little Charlie Gard, who was born healthy on August 4, 2016 in Bedford, southwest London. However, at eight weeks, his mother, Connie Yates, 31, noticed that he was “floppier” than other babies his age.
She and the boy’s father, Chris Gard, 32, took him to the doctors where tests revealed he had a rare mitochondrial depletion disease. The condition, of which there have been just 16 known cases, causes a depletion in the organs and muscles that leaves the lungs so weak the person can only breathe on a ventilator. At this point, Charlie is in the terminal stages of the disease and is severely brain damaged. He can no longer see or hear.
However, his parents learned of a treatment known as nucleoside bypass therapy which is being offered in the United States. According to The Sun, this treatment can theoretically repair mitochondrial DNA by giving his body the naturally occurring compounds he needs but isn’t able to produce. The problem is that only 18 people were treated with the therapy thus far and none were in a condition as severe as Charlie’s.
But his parents were more than willing to take a chance on the therapy and fought for months to be able to take Charlie to the U.S. to receive the treatment. Using a crowd-funding sight, they quickly raised the 1.7 million USD needed for the therapy, but doctors determined that the treatment would not work and wanted to discontinue the child’s life support.
The parents refused and the case landed in court where a judge ruled against them and gave the hospital permission to remove Charlie’s life support. The couple immediately appealed and gathered 110,000 signatures asking people to write letters to the Prime Minister asking that the child should be released from the hospital.
A judge once again ruled against the couple and they took their case to the European Court of Human Rights where a judge ruled that his life support should be continued until June 19. The parents once again appealed, and their appeal was rejected. Not only would their son be taken off life support and die, but authories refused to let the boy be released from the hospital so that he could die at home with his family.
“Even though we offered to pay for him to be transported back home, doctors have now told us he must die in hospital. We offered to pay for transport privately but that’s not an option,” Connie said.
“We want to give him a bath at home, put him in a cot which he has never slept in but we are now being denied that,” Chris added. “We know what day our son is going to die but don’t get a say in how that will happen.”
They are spending their son’s last hours of life at his side in the hospital.
Friends told the Mail that the couple is understandably devastated. “Connie and Chris are absolutely distraught, utterly heartbroken. It has ripped their world apart. The agony they have gone through is unimaginable. Fortunately they have huge support from a very loving and close family but losing a child is every parent’s nightmare. And for them the agony is more unbearable as they have fought so very hard for treatment they firmly believed would save Charlie’s life.”
Charlie’s story has gone viral and has touched the hearts of people around the world.
Even the Vatican weighed in today, with Archbishop Vincenzo Paglia, president of the Pontifical Academy for Life, saying that the interests of little Charlie must be paramount, but “we must also accept the limits of medicine and […..] avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.”
He goes on to speak of the complexity of the situation, the heartrending pain of the parents, and the efforts of so many to determine what is best or Charlie.
“We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration” but adds that “we do, sometimes, however, have to recognize the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”
He also warned against ideological or political manipulation, and media sensationalism, stressing that “the wishes of parents must be heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone.”
The parents say that they will use the money raised for Charlie’s treatment to set up a fund to help children in similar situations.
People can visit the family’s Facebook page for more information.
Let us keep this family in our prayers in a special way as they face this final stage in Charlie’s journey.
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