This article is from the source 'bbc' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.
You can find the current article at its original source at http://www.bbc.co.uk/news/uk-england-39181405
The article has changed 5 times. There is an RSS feed of changes available.
Version 1 | Version 2 |
---|---|
Parents 'should decide' care of baby | Parents 'should decide' care of baby |
(about 4 hours later) | |
The parents of a seven-month-old baby who are challenging doctors in court to keep him on life support say they deserve the right to judge his care. | The parents of a seven-month-old baby who are challenging doctors in court to keep him on life support say they deserve the right to judge his care. |
Connie Yates's and Chris Gard's son, Charlie, is receiving 24-hour treatment at London's Great Ormond Street hospital for a rare genetic condition. | Connie Yates's and Chris Gard's son, Charlie, is receiving 24-hour treatment at London's Great Ormond Street hospital for a rare genetic condition. |
With no accepted cure for his condition, the hospital believes Charlie should be allowed to die. | With no accepted cure for his condition, the hospital believes Charlie should be allowed to die. |
But his parents say pioneering US treatment could save his life. | But his parents say pioneering US treatment could save his life. |
They told the BBC's Victoria Derbyshire programme that they will continue to fight for their child's survival. | They told the BBC's Victoria Derbyshire programme that they will continue to fight for their child's survival. |
"He can move his mouth, he can move his hands... He can't open them fully, but he can still open his eyes and see us, in response to us. | |
"We don't feel he's in pain at all." | |
The couple, who live in London, want to take Charlie to the US, where they believe he may have a chance of surviving if he receives pioneering treatment. | The couple, who live in London, want to take Charlie to the US, where they believe he may have a chance of surviving if he receives pioneering treatment. |
"We just want to have our chance. It would never be a cure but it could help him live. If it saves him, amazing," Miss Yates said. | "We just want to have our chance. It would never be a cure but it could help him live. If it saves him, amazing," Miss Yates said. |
Unbelievably rare' | Unbelievably rare' |
"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." | "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." |
Charlie, who was born on 4 August, was admitted to Great Ormond Street in October after developing aspiration pneumonia. | Charlie, who was born on 4 August, was admitted to Great Ormond Street in October after developing aspiration pneumonia. |
He was later diagnosed with mitochondrial depletion syndrome - a condition that causes progressive muscle weakness. | He was later diagnosed with mitochondrial depletion syndrome - a condition that causes progressive muscle weakness. |
"He's only one of 16 in the whole world affected by it. Chris and I are both carriers," Miss Yates said. | "He's only one of 16 in the whole world affected by it. Chris and I are both carriers," Miss Yates said. |
"It's so unbelievably rare we would have the same fault on the same gene. Very, very rare." | "It's so unbelievably rare we would have the same fault on the same gene. Very, very rare." |
Miss Yates has launched a campaign - #CharliesFight - which has raised more than £220,000 of the £1.2m she believes is needed for Charlie to receive the treatment abroad. | Miss Yates has launched a campaign - #CharliesFight - which has raised more than £220,000 of the £1.2m she believes is needed for Charlie to receive the treatment abroad. |
"I want the judge to have the belief I have in this medication. [Great Ormond Street Hospital] have never used this medication," Miss Yates said. | "I want the judge to have the belief I have in this medication. [Great Ormond Street Hospital] have never used this medication," Miss Yates said. |
"The judge needs to trust us, we are his parents. We don't want him to suffer. If he is suffering then of course I would let him go." | "The judge needs to trust us, we are his parents. We don't want him to suffer. If he is suffering then of course I would let him go." |
She added: "Someone else in the world is willing to take him and help him. Why can't we try that?" | She added: "Someone else in the world is willing to take him and help him. Why can't we try that?" |
A spokesperson for Great Ormond Street Hospital for Children NHS Foundation Trust said: "Charlie has a very rare and complex disease, for which there is no accepted cure. | A spokesperson for Great Ormond Street Hospital for Children NHS Foundation Trust said: "Charlie has a very rare and complex disease, for which there is no accepted cure. |
"Charlie was very unwell when he was admitted to Great Ormond Street Hospital and has remained under 24-hour care on our intensive care unit. | "Charlie was very unwell when he was admitted to Great Ormond Street Hospital and has remained under 24-hour care on our intensive care unit. |
"But his condition has continued to deteriorate and we now feel we have exhausted all available proven treatment options. | "But his condition has continued to deteriorate and we now feel we have exhausted all available proven treatment options. |
"We cannot imagine how hugely distressing this is for his family. | "We cannot imagine how hugely distressing this is for his family. |
"We continue to support them in every way we can, while advocating, what we believe, is best for Charlie." | "We continue to support them in every way we can, while advocating, what we believe, is best for Charlie." |
Watch the Victoria Derbyshire programme on weekdays between 09:00 and 11:00 on BBC Two and the BBC News Channel. | Watch the Victoria Derbyshire programme on weekdays between 09:00 and 11:00 on BBC Two and the BBC News Channel. |