The parents of 11-month-old Charlie Gard haven’t given up their fight to have their terminally ill son moved to the U.S. for experimental treatment. Despite having lost court battles in the UK and EU, court battles that have given medical professionals the legal right to remove their child from life support against their wishes, Charlie Gard’s parents are still battling to save their baby and bring him to the United States for the treatment they believe could save his life as well as give him a measurable quality of life, despite the opinions of his doctors.
On June 27, the parents of Charlie Gard lost their final appeal to keep their terminally ill son alive. Charlie is one of just 16 people in the world known to suffer from a specific form of mitochondrial depletion syndrome. The baby’s disease has rendered him profoundly brain damaged, blind, deaf, and incapable of breathing or eating without the assistance of life support. According to doctors, experimental treatment would only prolong his suffering without any reasonable potential of providing measurable improvement in his condition.
Doctors at the Great Ormond Street Hospital in London (where Charlie has lived and received treatment for most of his life), legal professionals, and even the European Court of Human Rights have determined that the baby is currently “being exposed to continued pain, suffering and distress,” and that the experimental American treatment had “no prospects of success… would offer no benefit.”
Simply put, while the parents of Charlie Gard have found an experimental treatment that has a chance of halting his mitochondrial depletion syndrome, the brain damage Charlie has suffered is likely irreversible. Even the most advanced known experimental treatment has little chance of improving his quality of life.
Despite the arguments of medical and legal professionals, Charlie Gard’s parents haven’t given up their fight. In the weeks since the European Court of Human Rights agreed that it’s time to end Charlie’s life support and suffering, Connie Yates and Chris Gard have won several small victories. They were granted “a few more days” with their terminally ill son after the Great Ormond Street Hospital planned to remove Charlie from life support on June 30.
Look at these 3! How can anyone's heart not break for them?! Time for us to REALLY get involved and do something about it! Even if you only have a half hour to spare tonight join the fight! DOWNING STREET 6PM! TONIGHT! #charliesfight #charliesarmy #downingstreet #charliesarmy #charliesfight #london #parentalrights
They have garnered the support of the Pope and even, inexplicably, American POTUS Donald Trump.
Now, reports ABC News, Charlie Gard’s parents are getting a bit of a reprieve. With the support of the Great Ormond Street Hospital, Charlie’s parents will be in front of the High Court in London on Monday to argue – once again – that their son should be taken to the United States for experimental treatment, that he “deserves a chance.” Chris Gard and Connie Yates have raised over £1.3 million to bring Charlie to the U.S. via GoFundMe, and have vowed to donate the money to mitochondrial depletion syndrome research if Charlie Gard never gets his chance at treatment.
On Sunday, Gates and Yates delivered a petition signed by over 350,000 Charlie Gard supporters to the Great Ormond Street Hospital. The petition in question urged the hospital to allow Charlie to go to the U.S. for experimental treatment, in spite of earlier court rulings and hospital opinions that Charlie Gard should be allowed to “die with dignity.”
Absolutely not. 100% feel their pain but just wouldn't go down their route personally. Not heartless just because it's a different opinion.
— Amie △⃒⃘ (@amiescool) July 9, 2017
Charlie belongs to his family
— Sally frise (@FriseSally) July 7, 2017
A HUGE thank you to all you out there supporting and sharing Charlie's story!please keep going!the fight is not over!!!! #charliegard
— Charlie's Fight (@charliesfight) July 8, 2017
Medicine should not be a dictatorship. Patents should not have to ask permission to take their children for treatment.
— Paul Anthony Taylor (@paulanthtaylor) July 9, 2017
Why are we interfering with another nation's decision regarding a very private personal health care issue? Not appropriate.
— SunshineDay (@Sunshine2348432) July 9, 2017
“There are now seven doctors supporting us from all over the world — from Italy, from America, from England as well — and they think that [experimental treatment] has a chance, you know, up to 10 percent chance of working for Charlie, and we feel that that’s a chance worth taking…”
According to Charlie’s father, the baby should have gotten his chance at experimental treatment “a long time ago.”
Monday’s court hearing will determine whether or not Charlie Gard will get the experimental treatment in question or if his life support will be removed, as was ruled permissible on June 27.
Please join us tomorrow, Sunday to rally for Charlie Gard! The rally will take place Sunday, July 9th, at 1:00 p.m. We are hoping that Chris Gard and Connie Yates, parents of Charlie Gard, will be able to join us. There will also be guest speakers and a time of prayer. We will organize one block from the Great Ormond Street Hospital at Queen Square, directly off of Great Ormond Street. Nearly 350,000 people have signed the petition supporting Charlie. Immediately following the rally, we will walk over to the Great Ormond Street Hospital and deliver the petition signatures in person. YOU are helping us make a difference for Charlie. Please help us make sure we have a large showing for him on Sunday! If you are unable to make it, please keep Charlie in your prayers. Thank you again for your continued support. LINK IN BIO TO THE PETITION IF YOU CAN PLEASE SIGN IT. MANY THANKS.
During their Sunday appearance, Charlie’s parents argued against earlier assessments that their son had suffered irreparable brain damage, saying that there is “no evidence of catastrophic brain damage” in 11-month-old Charlie. What’s more, according to Charlie’s dad, the experimental treatment, including nucleoside therapies, could “get into the brain and help” the brain damage the baby has already suffered.
While Great Ormond Street Hospital is petitioning the High Court for its opinion about potential experimental treatment for Charlie Gard, the institution that has cared for the ill infant since last November is concerned that such treatment will only prolong the baby’s current state of pain and suffering.
“Our doctors have explored every medical treatment, including experimental ies. Independent medical experts agreed with our clinical team that this treatment would be unjustified. Not only that, but they said it would be futile and would prolong Charlie’s suffering. This is not an issue about money or resources, but absolutely about what is right for Charlie.”
According to the hospital, Charlie Gard’s condition is so severe that experimental treatment will likely be ineffective. While Great Ormond Street Hospital did apply for the treatment in June, the overwhelming opinion is that epileptic encephalopathy had caused severe and irreversible brain damage.
“The view was that his epileptic encephalopathy was such that his brain damage was severe and irreversible that treatment was potentially painful but incapable of achieving anything positive for him.”
Interviewer: "Are the nurses supportive of you?" C: "Yes, the nurses are really good"
The nurses are the ones who arranged Charlie's first picnic and care for Charlie alongside his parents day in, day out. Thank you to the nursing staff for their ongoing support, we appreciate really it. #thankyoutothenurses #charliesfight #charliesarmy
The nucleoside therapy offered in the United States has not yet been “sufficiently tested” on humans and makes no promises of success in Charlie’s case.
On Sunday, British justice secretary said that the U.K. government won’t be playing a role in the ultimate decision of Charlie Gard’s continued care. Rather, Monday’s hearing is in the hands of judges ruling “independent and dispassionately” based on the facts of the Charlie Gard case – despite the continued emotional pleas of his parents and supporters.
[Featured Image by Connie Yates/GoFundMe]