A final appeal to allow continued life support for a UK baby whose parents want to seek experimental treatment in the U.S. has been rejected by the European Court of Human Rights.
According to the BBC, the European Court judges agreed on the decision to withdraw life support, stating that the experimental treatment would only expose the baby, Charlie Gard, to “continued pain, suffering and distress,” while adding “no prospects of success.”
A legal battle has been ongoing since early March, after Charlie was diagnosed with Mitochondrial Depletion Syndrome – an extremely rare disease which progressively weakens muscles and causes brain damage.
Specialists in the U.S. offered Charlie nucleoside therapy, an experimental treatment, which his parents were hoping would be a second chance for their son, and asked the court to keep him on life support.
Charlie’s parents – Chris Gard and Connie Yates – had raised close to $1.6 million on GoFundMe, an online fundraising site, to cover the experimental treatment in the U.S.
The nearly 11-month-old baby is thought to be one of only 16 people in the world who suffer from Mitochondrial Depletion Syndrome. He has thus far suffered severe brain damage and is only able to survive by a feeding tube and an artificial ventilator.
Charlie’s life support machine is expected to be turned off within the next few days. His parents have said that the money they raised will be donated to a charity to help other children with their son’s condition.
Charlie’s case was initially taken up by the Family Division of the High Court at the beginning of March.
A decision was reached in April, with the judge, Justice Francis, saying, “There is unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage. I dare say that medical science may benefit, objectively, from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him.”
The judge applauded the efforts of Charlie’s parents, praising “their absolute dedication to their wonderful boy, from the day that he was born,” but still made the decision to pull life support from the child.
An appeals court agreed with the lower court in a May ruling.
However, the lawyer for Charlie’s parents maintained that the experimental treatment would not cause further harm or suffering. And the young boy’s mother Connie told the BBC that even if the experimental treatment did not help her son, she would like to be a stepping stone in developing a treatment that might save the lives of other babies with similar diseases.
“We just want to have our chance. It would never be a cure but it could help him live. If it saves him, amazing. I want to save others. Even if Charlie doesn’t make it through this, I don’t ever want another mum and their child to go through this,” she said.