Thursday, 29 June 2017

Charlie Gard: The EHRC Rules Against Parents' Bid for U.S. Treatment

Dad, Chris Gard, Mum, Connie Yates and their Son, Charli
A European Human Rights court has given its verdict on a case of human rights that will compel a couple to allow their sick baby to die.

The parents of the baby Charlie, Chris Gard and Connie Yates have been in a long legal battle to save their baby who is suffering from a rare genetic illness.

Charlie who is currently on life support was diagnosed when he was 8 weeks old with mitochondrial DNA depletion syndrome and is considered to be one of only 16 babies worldwide with this disease. His condition is progressive and currently incurable and is eventually fatal.  

Meanwhile, doctors are developing treatments in various mitochondrial conditions including the nucleoside treatment Charlie’s parents have been fighting for. Charlie’s parents had asked the court to determine if they, as parents have the right to continue to provide medical treatments for their son or if he should be allowed to die.

Now 10-months old, Charlie’s parents wanted the court to let them use a potentially life-saving drug from the U.S. on their son. They believe that the drug (which is still experimental), would help their son’s genetic condition rather than allow him to die as doctors have recommended. However, a June 27 ruling of the court held that the application by the parents was ‘inadmissible’. The court said that the baby was being exposed to continued pain, suffering and distress in pursuit of treatments that were unsure. It added that any additional treatment would continue to cause harm to the baby stressing that its ruling is ‘final’. The EHRC also removed the interim measure to keep Charlie’s life support in place.

Charlie’s parents have been told by the hospital that their son’s life support will be switched off tomorrow and he cannot leave the ward.

Meanwhile, Charlie’s parents have so far raised over £1.3 million through a GoFundMe account for his treatment. With the ruling of the court, the parents are unsure what they want to do with the money. One plan is to donate some to the U.S. hospital willing to treat Charlie, while the rest will be put into a charity for other children with similar mitochondrial conditions “so that nobody else ever has to go through what we have.”

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