WASHINGTON – Charlie Gard's life could have been saved if treatment had been allowed sooner, Charlie's parents claim.
Chris Gard and Connie Yates, parents of 11-month-old Charlie Gard, released a statement Monday after they withdrew their appeal to Britain's High Court to allow them to take Charlie outside the U.K. for treatment.
Charlie suffers from a rare genetic mutation of mitochondrial DNA depletion syndrome. He reportedly has brain damage, is blind and deaf, and needs a ventilator to breathe.
In their statement, Charlie's parents said, "A whole lot of time has been wasted."
"We are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought," the statement continued. "Tragically having had Charlie's medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner, he would have had the potential to be a normal healthy little boy. Despite his condition in January, Charlie's muscles were in pretty good shape and far from showing irreversible catastrophic structural brain damage."
Others are also blaming Charlies terminal condition – he's expected now to be treated only with palliative care until he dies – on the delay caused by the court battle after Great Ormond Street Hospital decided he should be allowed to "die with dignity."
Wesley Smith at the National Review said, "Charlie’s condition was degenerating. He is in worse shape now than he was four months ago. Had the hospital allowed the U.S. specialist to examine Charlie when the parents first wanted, he might have then been eligible for the experimental medical Hail Mary pass they hoped to attain for him.
"The question of stopping Charlie's life support was a value judgment, not a medical determination," Smith continued. "The doctors didn't insist on stopping treatment because it was not working, but because it was. Charlie was being kept alive as desired by his parents when the doctors believed it was better for the baby to die sooner rather than later."
Bobby Schindler, brother of Terri Schiavo who has been in London assisting the Gard family with their court case, agreed.
"The U.K. medical and legal fields let Charlie languish and deteriorate to the point where treatments that have worked for other children like him no longer had a chance," Schindler said. "Charlie Gard is a victim of a culture of medical indifference that turned out to be as corrosive and ultimately lethal as was his underlying genetic condition."
Charlie's parents' heart-breaking statement ended saying "sweet dreams baby, sleep tight our beautiful little boy. We love you."
The following is the full statement from Chris Gard and Connie Yates, via Yahoo News:
"Firstly, I would like to thank our legal team who have worked tirelessly on our behalf for free. And to the nurses and staff at Great Ormond Street Hospital who have cared for Charlie and kept him comfortable and stable for so long.
"We would also like to thank everybody who supported us, including all the people here for us today.
"This is one of the hardest things that we will ever have to say and we are about to do the hardest thing that we'll ever have to do, which is to let our beautiful little Charlie go.
"Put simply, this is about a sweet, gorgeous innocent little boy who was born with a rare disease who had a real genuine chance at life and a family who loved him so very dearly. And that's why we fought so hard for him.
"We are truly devastated to say that following the most recent MRI scan of Charlie's muscles as requested in a recent MDT meeting by Dr Hirano.
"As Charlie's devoted and loving parents, we’ve decided that it is no longer in Charlie's best interest to pursue treatment and we will let our son go and be with the angels.
"The American and Italian team were still willing to treat Charlie after seeing his recent MRI and EEG perform last week, but there is one simple reason why treatment cannot now go ahead and that is time. A whole lot of time has been wasted.
"We are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.
"Tragically having had Charlie's medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner, he would have had the potential to be a normal healthy little boy.
"Despite his condition in January, Charlie's muscles were in pretty good shape and far from showing irreversible catastrophic structural brain damage.
"Dr. Hirano and other experts say his brain scans and EEGs were those of a relatively normal child of his age.
"We knew that ourselves because as his parents, we knew our son, which is why we continued fighting.
"Charlie's been left for his illness to deteriorate devastatingly to the point of no return.
"This has also never been about 'parents know best.'
"All we wanted to do was take Charlie from one world-renowned hospital to another world-renowned hospital in the attempt to save his life and to be treated by the world leader in mitochondrial disease.
"We'll have to live with the what-ifs which will haunt us for the rest of our lives.
"Despite the way that our beautiful son has been spoken about sometimes, as if he is not worthy of a chance at life, our son is an absolute warrior and we could not be prouder of him and we will miss him terribly.
"His body, heart and soul may soon be gone, but his spirit will live on for eternity and he will make a difference to people's lives for years to come. We will make sure of that.
"We are now going to spend our last precious moments with our son Charlie who unfortunately won't make his first birthday in just under two weeks' time.
"And we will ask that our privacy is respected during this very difficult time.
"To Charlie we say mummy and daddy, we love you so much. We always have and we always will and we are so sorry we couldn't save you.
"Sweet dreams baby, sleep tight our beautiful little boy. We love you."
The announcement from the parents that they would be halting their legal work came earlier Monday.
Catherine Glenn Foster, president of Americans United for Life, is in London assisting Charlie's parents. She tweeted from the courtroom Monday that the Gard's lawyer said "it is too late. The damage has been done."
Armstrong: "For Charlie, it is too late. The damage has been done."
— CatherineGlennFoster (@cateici) July 24, 2017
Charlie's mother gave an emotional speech to the court, saying that "this is one of the hardest things we've ever had to do, to let our beautiful little boy go" and told Charlie that they are "so sorry that we couldn’t save you."
Connie, w Chris at her side: "This is one of the hardest things we've ever had to say, do, to let our beautiful little boy go."
— CatherineGlennFoster (@cateici) July 24, 2017
"Mummy and Daddy love you so much, always have, always will, and so sorry that we couldn't save you..."
— CatherineGlennFoster (@cateici) July 24, 2017
Foster also tweeted that Gard and Yates will plan to start a foundation in Charlie's honor "to stand for other parents, children."
A: Charlie has waited patiently for his chance at treatment. Due to delay, his opportunity has been lost. C, C plan to start foundation...
— CatherineGlennFoster (@cateici) July 24, 2017
...so that Charlie's voice will not be lost. To stand for other parents, children.
— CatherineGlennFoster (@cateici) July 24, 2017
Nicholas Francis, the judge who has been overseeing the Gards' appeal, said "no parent could have done more for their child."
Judge: "no parent could have done more for their child."
— CatherineGlennFoster (@cateici) July 24, 2017
Terri Schiavo's brother, Bobby Schindler, who is currently in London assisting the Gard family, said people need to know about the issue.
"I remember the comfort my family received from the tremendous popular support we received from people all around the world," he told WND.com.
Schiavo died in 2005 after a court ordered removal of her feeding tube and water at the request of her husband. Since then, Schindler has devoted himself to defending medically vulnerable people.
Schindler believes Charlie's struggle is vitally important in the larger struggle of parental rights against encroaching government influence in end-of-life decisions.
"I think it’s obvious to any normal observer of the news surrounding Charlie that this is a simple case of fit and competent parents being denied the right to care for their son, and an aggressive medical and legal system intent on imposing its will rather than empowering the weak and vulnerable – in this case, Charlie and his parents," he said.
"Once these types of decisions are enshrined into its precedent – the notion, as we are seeing in Charlie’s case, that parents are not fit to determine how best to care for their son – people realize that the same thing could happen to them, and that it has literally been stated that it’s in Charlie’s best interest to die."
WND reported earlier this year on the 12th anniversary of the death of Terri Schiavo. The media and her husband, Michael Schiavo, asserted Terri was in a “persistent vegetative state,” but her parents and brother, Bobby Schindler, insisted otherwise, claiming she was able to swallow, laugh and express love for her family.
In 1990, Terri, at age 26, collapsed in her St. Petersburg, Florida, home for a reason that still hasn’t been explained and was taken to a hospital by first responders who feared she was dead. She was comatose for a time, then started responding and was moved to a care center. Her family members say she was getting better before her court-ordered starvation.
WND has been reporting on the Terri Schiavo story since 2002. Read WND's unparalleled, in-depth coverage of her life-and-death fight, including more than 150 original stories and columns.