Our gorgeous little 11 month old boy Charlie has a devastating disease called mitochondrial depletion syndrome. Me and his Daddy Chris are both carriers of a faulty gene. (This was unknown to us until Charlie was 3 months old)He was born on the 04/08/16 (4th of August) perfectly healthy but then he started to decline. We took him into hospital at 8 weeks old and none of us have been anywhere near home since. We have been with Charlie day in, day out & watched our poor baby get weaker and weaker, he now needs a ventilator to breathe but we have never lost hope throughout all this time! After endlessly researching and speaking to Dr's all over the worldin a medication that may help him and. It hasn't been tried on anyone with his gene before (he's only number 16 in the world ever reported) but it's had success with another mitochondrial depletion syndrome called TK2 which is similar - it's helping children to get their strength back and live longer! We strongly feel as his parents thatto try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.Charlies condition is caused by a disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys and brain. There is a new treatment available which is a nucleoside bypass therapy, which could potentiallyand help it synthase again by giving him the naturally occurring compounds that his body isn't able to produce. It's oral medication so nothing invasive or harmful., he can't have this treatment in the UK so our only hope now is to get Charlie to America - this will obviously cost us a ridiculous amount of money, money we unfortunately don't have enough of.Great ormond street hospital have already taken us to court to try and gain permission to turn off our baby's ventilation which will result in Charlie's death :( They don't think it's in his best interests to go but we think it's in his best interests to have a chance to improve.because he has a rare disease. He deserves a chance and he deserves a life as much as anyone else. We understand that rare diseases don't get enough funding for research but why should that be a reason for a child to die?! He's here now and this could help our baby.If Charlie receives this treatment and it does work like the Dr in America thinks,and it will open up other trials on other mitochondrial depletion syndrome's.We need to change things and show how determined parents can forge a path for other families encountering similar obstacles.#charliesfight #charliesarmy #savealife ||||| Decision by court of human rights closes off last legal avenue of appeal for family of critically ill boy 
 
 The European court of human rights has rejected an appeal by the parents of a critically ill baby that he should be allowed to undergo experimental treatment in the US. 
 
 The decision by the Strasbourg court closes off the last legal avenue of appeal for the family of Charlie Gard and follows a similar ruling by the UK’s supreme court. 
 
 The judgment also lifts a court order under which doctors at Great Ormond Street hospital in London had been required to maintain life support treatment for the 10-month-old child who has brain damage and a rare genetic condition. 
 
 
 
 The hospital said it would not “rush .... to change Charlie’s care” and that any alteration to his current treatment would “involve careful planning and discussion”. 
 
 In a statement, the ECHR said it had, by a majority of the seven judges who considered the written arguments, declared the application inadmissible. It “endorsed in substance the approach” taken by the British courts and declared “the decision is final”. 
 
 It added: “Consequently, the court also considered that it was appropriate to lift the interim measure.” That measure required doctors to continue providing life support treatment for Charlie. 
 
 The infant’s parents, Chris Gard and Connie Yates, from Bedfont in west London, had asked the courts to consider whether it would be in the best interests of their son to undergo experimental treatment in the US. 
 
 British courts have already concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely Charlie would suffer significant harm if his suffering was prolonged without realistic prospect of improvement. The experimental therapy, the courts maintained, would produce no effective benefit. 
 
 
 
 Gard and Yates, who are in their 30s, have launched a fundraising appeal to help pay for doctors’ bills in the US. It reached a £1.2m target before the initial high court trial. That figure has now topped £1.3m, consisting of more than 83,000 donations. 
 
 At the supreme court hearing, the family’s lawyer, Richard Gordon QC, told judges: “The issue is whether the state has the power to intrude on decisions the parents have made in order to mandate that child’s death before it might come to an end. These are model parents trying to do all they possibly can for the benefit of their child. Their view on what is best for Charlie differs from the court.” 
 
 The European judges said it was “not for the court to substitute itself for the competent domestic authorities”. British court judgments in the case had been “meticulous”, the ECHR noted. 
 
 It said: “The domestic courts had concluded, on the basis of extensive, high-quality expert evidence, that it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.” 
 
 The seven judges who heard the case included the British judge at Strasbourg, Tim Eicke. The law firm retained by the family for the appeal, Harris da Silva Solicitors, said it could not comment immediately on the ECHR decision. 
 
 Responding to the judgment, a spokesperson for Great Ormond Street Hospital for Children NHS foundation trust said: “Our thoughts are with Charlie’s parents on receipt of this news that we know will be very distressing for them. 
 
 “Today’s decision by the European court of human rights marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps. 
 
 “There will be no rush by Great Ormond Street hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion.” 
 
 
 
 ||||| (CNN) The European Court of Human Rights ruled Tuesday a hospital can discontinue life support to a baby suffering from a rare genetic disease. His life support will be switched off Friday, his parents said. 
 
 Born in August, Charlie Gard has a rare genetic disorder known as mitochondrial DNA depletion syndrome. Caused by a genetic mutation, it leads to weakened muscles and organ dysfunction, among other symptoms, with a poor prognosis for most patients. 
 
 Charlie is on life support and has been in the intensive care unit at the Great Ormond Street Hospital for Children in London since October. His doctors wish to take him off life support, but his parents disagree. 
 
 Charlie's parents, Chris Gard and Connie Yates, wanted the hospital to release Charlie into their custody so they can take him to the United States for an experimental treatment. 
 
 "The domestic courts concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit," a press release from the court announcing the decision said. 
 
 Charlie's parents appealed to the UK Supreme Court to decide the best interests of their child. After they lost that appeal, the 10-month-old was due to have his life support switched off at the end of the day June 13. 
 
 Gard and Yates then filed a request with the European Court of Human Rights, an international court based in Strasbourg, France, to consider the case. 
 
 The original ruling to provide life support until June 13 was extended by European Court of Human Rights initially for one week, until June 19. Rather than making a decision then, the court granted a three week-extension, until July 10, to allow for a more informed decision by the court. That extension ended Tuesday with the courts decision. 
 
 "There will be no rush by Great Ormond Street Hospital to change Charlie's care and any future treatment plans will involve careful planning and discussion," the hospital said in a statement after the decision was announced. They added that their thoughts are with Charlies parents. 
 
 "We are utterly heartbroken spending our last precious hours with our baby boy," Charlie's parents posted on Facebook Thursday. They went on to say the system had failed their son. 
 
 Disagreements on care 
 
 Under British law, parental responsibility includes the right to give consent for medical treatment, according to the British Medical Association 
 
 However, parental rights are not absolute, and in cases in which doctors and parents disagree, the courts may exercise objective judgment in a child's best interest. 
 
 In April, a judge tasked with ruling on the impasse between doctors and parents decided in favor of the Great Ormond Street Hospital doctors. In his decision, Justice Francis said life support treatment should end so Charlie could die with dignity. 
 
 The boy's parents challenged this ruling in May, yet it was upheld by a Court of Appeal. Three Supreme Court justices later dismissed another challenge from the couple. 
 
 Since Charlie's birth, "his condition has deteriorated seriously," the UK Supreme Court stated in a decision June 8; his brain is severely affected, and "he cannot move his arms or legs or breathe unaided." 
 
 On this basis, the court ruled that the child's life support should be switched off June 13, but the family appealed to the European court. 
 
 Charlie's parents argued that the UK courts gave insufficient weight to their own human rights, and some of Charlie's human rights, in their decision-making, Wilson said. 
 
 After the European court's ruling to extend the deadline while judges considered the case further, the Supreme Court told doctors it "would not be unlawful" to continue to provide life support. 
 
 After the extension, a Supreme Court hearing was requested by the government and the Great Ormond Street Hospital for Children, which did not know whether the Strasbourg court order was legally binding in the UK, Wilson explained. 
 
 "There was also a secondary issue, which was that (Great Ormond Street Hospital's) legal representatives were concerned that at present, doctors did not have sufficient legal clarity about what they can and can't do if Charlie's condition deteriorates," Wilson said. "So this court was also invited to consider whether any UK court, and if so which court, should handle that matter." 
 
 Experimental science in US 
 
 Charlie's parents had hoped to take their son to the US where a doctor had agreed to carry out an experimental treatment called nucleoside bypass therapy. As the parents explained in their fundraising efforts, the therapy is an oral medication that provides Charlie with naturally occurring compounds that his body is not able to produce. In this way, the medicine might repair Charlie's flawed mitochondrial genes. 
 
 According to bioethicist Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics, the experimental therapy offers a very small chance of some improvement. 
 
 In fact, it has never been used to treat this form of mitochondrial DNA depletion syndrome, according to the British ruling, though it has proved beneficial to patients with a different form of the disease. 
 
 "We strongly feel as his parents that Charlie should get a chance to try these medications," Gard and Yates wrote on their on their campaign website, Charlie's Fight 
 
 "He literally has nothing to lose but potentially a healthier, happier life to gain," they said. 
 
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 Parents are rightly at the "heart" of decisions made about life-sustaining treatment for critically ill children, noted Dominic Wilkinson, director of medical ethics at the Oxford Uehiro Centre. 
 
 "However, there are limits," Wilkinson wrote in a recent editorial about Charlie's case published in The Lancet , a medical journal. 
 
 "Sadly, reluctantly, doctors and judges do sometimes conclude -- and are justified in concluding -- that slim chances of life are not always better than dying." Sometimes, the "best that medicine can do" -- and the most ethical decision -- is to provide comfort and to avoid painful and unhelpful medical treatments, he wrote. 
 
 The court said the decision was meticulous, noting that they spoke with Charlie's health care providers, independent experts, experts recommended by the family, and Charlie's parents to inform the ruling. In the end, the press released said they determined, "it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm." ||||| Our gorgeous little 7 month old boy Charlie has a devastating disease called mitochondrial depletion syndrome. Me and his Daddy Chris are both carriers of a faulty gene. 
 
 He was born on the 04/08/16 (4th of August) perfectly healthy but then he started to decline. We took him into hospital at 8 weeks old and none of us have been anywhere near home since. We have been with Charlie day in, day out & watched our poor baby get weaker and weaker, he now needs a ventilator to breathe but we have never lost hope throughout all this time! After endlessly researching and speaking to Dr’s all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain. 
 
 Charlies condition is caused by a disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys and brain. There is a new treatment available which is a nucleoside bypass therapy, which could potentially repair Charlie’s mtDNA and help it synthase again by giving him the naturally occurring compounds that his body isn’t able to produce. 
 
 We are running out of precious time with our baby, he can’t have this treatment in the UK so our only hope now is to get Charlie to America – this will obviously cost us a ridiculous amount of money, money we unfortunately don’t have enough of. 
 
 If we don’t raise enough money then we wont be able to go to America for treatment and Charlie will die! Great ormond street hospital have already taken us to court to try and gain permission to turn off our baby’s ventilation which will result in Charlie’s death 🙁 
 
 The court date is April 3rd and it will be held in the high Court in London. 
 
 We just CAN’T let our baby die when there is something that might help him! We won’t give up on him because he has a rare disease. He deserves a chance and he deserves a life as much as anyone else. We understand that rare diseases don’t get enough funding for research but why should that be a reason for a child to die?! He’s here now and this could help our baby. 
 
 If Charlie receives this treatment and it does work like the Dr in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndrome’s. 
 
 We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie xxx 
 
 #charliesfight #charliesarmy #savealife 
 
 Help spread the word!
– The legal fight is over: A hospital in the UK will take an infant off life support after his parents failed to convince a court that he could be saved with an experimental treatment. The European Court of Human Rights ruled Tuesday that keeping 10-month-old Charlie Gard alive would do nothing but prolong his pain, reports the Guardian. He suffers from a rare disease known as mitochondrial DNA depletion syndrome, and parents Chris Gard and Connie Yates wanted to take him to the US for experimental treatment. His UK doctors, however, say it's hopeless, and parents' rights are not absolute in the UK in such cases, explains CNN. A number of courts ruled against them, with their last hope being the ECHR. But the seven justices declined to overrule the British courts. "The decision is final," said the ruling. Charlie is currently on life support at Great Ormond Street Hospital in London, and a spokesperson said the hospital would not "rush" to take him off it. "Our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps." The details on where Charlie's parents had wanted to take him in the US have been kept under wraps during the legal wrangling, and supporters had raised more than $1.6 million to cover expenses. Medical experts in Britain said the treatment had no chance of saving the infant, but his parents made the case on their website that it was worth a try. "He literally has nothing to lose but potentially a healthier, happier life to gain," they wrote. (These parents gave up everything to keep their sick baby alive.)