Charlie Gard's parents withdraw appeal for his life

Baby Charlie Gard and parents (Photo: Twitter)

WASHINGTON – In a court hearing Monday, Charlie Gard's parents withdrew their appeal to Britain's High Court to allow Charlie to travel outside of the U.K. for treatment.

As a result, Charlie will be offered palliative care and kept comfortable until his rare genetic disease ends his life.

All the legal battles and delays that have faced his parents, Chris Gard and Connie Yates, have closed the window of opportunity to treat Charlie before his illness became too severe, those in court learned. Now there is no hope for a recovery on his part, so the parents have decided not to prolong his death and to drop their legal battle to stop the hospital from withdrawing his life support.

Catherine Glenn Foster, president of Americans United for Life, is in London assisting Charlie's parents. She tweeted from the courtroom on 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."

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Connie, w Chris at her side: "This is one of the hardest things weve 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 Gard's 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

Chris Gard and Yates had been fighting to save Charlie's life ever since about a month after his birth, when it was discovered that he suffers from a rare genetic disease called mitochondrial DNA depletion syndrome. WND recently conducted an exclusive interview with a leading medical expert in the field of genetics to understand Charlie's condition better.

Dr. Jimmy Lin is the founder and president of the Rare Genomics Institute, an international non-profit organization dedicated to helping families of people with rare diseases find the doctors and scientists who can treat them, and also provides a networking and crowdfunding platform so these families can afford to save the lives of their loved ones.

Lin explained Charlie's condition: "Charlie has a genetic disease called mitochondrial DNA depletion syndrome. Due to genes he inherited from his parents, he is unable to make DNA for the mitochondria, which are small organelles inside our cells. One of the most important functions for mitochondria is to create molecules used for energy. Therefore, tissues that use a lot of energy are often affected in this disease, such as muscle, brain, and liver."

He continued, "Due to the nature of these extremely rare diseases, there is no clear guideline or textbook on how to treat these patients and how to navigate the ethical issues."

He said the treatment that was under consideration for Charlie was a "a nucleoside bypass therapy. Because Charlie cannot provide some of the ingredients to make this special DNA himself, the treatment provides downstream naturally occurring products, so that his body can make mitochondrial DNA. It is essentially similar to an oral nutritional supplement – although one that is much more complex and under investigation."

The catch with this treatment: it has not been tested on a human with Charlie's condition.

"This has been shown to be effective in mice and select patient populations," Lin explained. "Because it's a product that already is in our bodies, it most likely would not cause Charlie any pain and most likely should have minimal side effects. However, due to the rarity of the disease and investigational nature of the treatment, it is hard to be completely certain with the outcomes and effects. This treatment for this variant of the disease has never been tried."

Lin said that in the U.S. there have been many cases of parents going to extreme lengths to help their children, and that he founded the Rare Genomics Institute to make sure they had the ability to go all out.

"At Rare Genomics Institute, we know that there are very many families in situations such as Charlie's. We know it's a hard and complicated road," he said. "We come along these families and provide as much assistance as we can – focusing mostly on helping them understand the science and helping them connect with the world's experts on these different diseases. Parents shouldn't have to almost get a PhD on their children's diseases to help. Parents shouldn't have to start a whole new non-profit to rare awareness of a specific rare disease. This is where Rare Genomics Institute helps."

Lin has published over 100 papers in scientific and medical journals. He is a pioneer in the field of genetics, having done work with Johns Hopkins, Washington University in St. Louis, and the National Cancer Institute. In addition to his work with the Rare Genomics Institute, he has done groundbreaking studies in using genetics to understand cancer, helping to identify it earlier and treat it better.

One of the efforts to help the infant was a move in a committee in Congress last week to give Charlie and his parents permanent residency in the U.S.

After treatments in the U.K. did not produce results, Charlie's parents raised $1.8 million to take him either to the U.S. or Italy for further treatment. But they were denied permission by their government to even take him out of the country, and that's why the court battle had developed.

In America, Rep. Jeff Fortenberry, R-Neb., tweeted July 19 that "We just passed amendment that grants permanent resident status to #CharlieGard and family so Charlie can get the medical treatment he needs."

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We just passed amendment that grants permanent resident status to #CharlieGard and family so Charlie can get the medical treatment he needs.

— Jeff Fortenberry (@JeffFortenberry) July 18, 2017

Rep. Kevin Yoder, R-Kan., chimed in, tweeting a picture of the amendment to the Homeland Security Appropriations Bill, which was approved unanimously Tuesday by the House Committee on Appropriations.

.@HouseAppropsGOP voted today to give lawful permanent residence to #CharlieGard so he can come to the US for world class medical care pic.twitter.com/FUTbfeZSr4

— Rep. Kevin Yoder (@RepKevinYoder) July 18, 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.