Friday 28 July 2017

Eleven-month-old Charlie Gard, whose short life captured the hearts of the world, has died a week before his first birthday. 
Charlie suffered from a rare genetic condition which saw him in hospital for the majority of his short life.
His parents, Connie Yates and Chris Gard, fought a lengthy and emotional legal battle to take their severely ill baby son to the US for treatment, but were denied by judges.
Charlie's mother, Connie, said tonight: 'Our beautiful little boy has gone, we are so proud of you Charlie.'
Yesterday courts denied his parents the chance to bring their son home to die and he was taken to a hospice. Charlie's plight has seen hundreds of supporters - called Charlie's Army - lending their voices and money to see the child given treatment, with £1.35 million raised on an online fund-raising site.
Pope Francis and US president Donald Trump weighed into the debate, with the Vatican saying the pontiff prayed for 'their wish to accompany and treat their child until the end is not neglected'. The protracted legal battle saw the couple take their case to the High Court, Court of Appeal and Supreme Court - all of which ruled life support treatment should end and Charlie should be allowed to die with dignity. Judges at the European Court of Human Rights refused to intervene in the case - and the couple said they had been denied their final wish to be able to take their son home to die and felt 'let down' following the lengthy legal battle.
The couple, of Bedfont, west London, ended their legal battle on July 24, in what they called the 'most painful of decisions' and their son was moved to a hospice on July 27 . 
Charlie, who was born on August 4 last year, has a form of mitochondrial disease, a condition that causes progressive muscle weakness and brain damage.
Described as 'perfectly healthy' when he was born, Charlie was admitted to hospital at eight weeks and his condition has progressively deteriorated. The couple said they wanted to take their son across the Atlantic for nucleoside bypass therapy, but specialists at Great Ormond Street Hospital in London, where Charlie was being cared for, said the treatment was experimental and would not help.
They paid tribute to their 'absolute warrior' less than a fortnight before his first birthday on the steps of the High Court, with father Chris saying: 'Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you.
'We had the chance but we weren't allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.'
Charlie's parents added they believed their son might have been saved if experimental therapy had been tried sooner.
Ms Yates said time had been 'wasted', adding 'had Charlie been given the treatment sooner he would have had had the potential to be a normal, healthy little boy.'
Doctors at Great Ormond Street did not agree, with lawyers representing the hospital saying the 'clinical picture' six months ago had shown irreversible damage to Charlie's brain.
They said the 'unstoppable effects' of Charlie's rare illness had become plainer as weeks passed. The syndrome is an inherited disease which starts to show symptoms in infancy.
Most patients are born after a normal pregnancy and appear healthy at birth.
Symptoms usually begin to appear in the first few months of life.
It causes progressive muscle weakness, decreased muscle tone and kidney problems.
It also causes patients to lose motor skills such as standing, walking, eating and talking.
Eventually the muscles that control breathing become weak and respiratory failure is the most common cause of death.
Intelligence is not usually affected.
Children with severe forms of the condition usually survive for less than a year.
It is not yet fully understood what causes the condition but both parents of the child have to carry the gene mutation.
It is recessive meaning a child has a 25 per cent chance of suffering from the disease if both their parents carry the mutation.

1 comment:

Smileband News said...

Sad news on baby Charlie gard, rest in peace

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