Charlie Gard’s parents, not to mention his thousands of worldwide supporters, may have succeeded in their efforts to keep the profoundly brain-damaged infant on life support. Charlie suffers from a debilitating form of mitochondrial depletion syndrome known to impact just 16 people worldwide. As a result, the 11-month-old is blind, deaf, suffers from irreversible and severe brain damage, and is incapable of breathing or eating on his own.
Because of Charlie’s health, multiple courts in the U.K. and Europe (most recently the European Court of Human Rights on June 27) have ruled that the most compassionate, humane course of treatment for the infant is to remove him from life support and allow him to “die with dignity.”
However, Charlie Gard’s parents have fought unfailingly to keep their baby alive, despite his failing health. Connie Yates and Chris Gard have raised £1,326,470 via a highly successful GoFundMe campaign to bring Charlie to the United States for experimental treatment. Despite their efforts, doctors at the Great Ormond Street Hospital in London (and multiple courts) have previously ruled that Charlie would benefit very little from such treatments.
According to the hospital and courts, even if Charlie Gard was successfully treated for his mitochondrial depletion syndrome, his brain damage is irreversible and his quality of life is unlikely to be improved.
In the wake of the European court’s ruling last week, Charlie Gard was scheduled to be removed from life support on June 30. However, after a tearful and emotional public plea from his devastated parents, who lamented that the Great Ormond Street Hospital refused to allow them to take their son home to die, they were given a few more days with their baby. Their request to take Charlie home, however, continues to be rejected by the hospital.
In recent days, the Charlie Gard case has received some very high-profile attention. Everyone from the pope to Donald Trump has publicly spoken out on the terminally ill infant’s behalf, with the pontiff arguing that Charlie’s parents should be able to care for their son “to the end” and Trump taking to Twitter to offer support.
Despite the support, the Great Ormond Street Hospital, and even Boris Johnson, have stated that moving Charlie Gard out of the U.K. for treatment is “impossible.”
That is, until Friday, July 7. On Friday, as the New York Times reports, the Great Ormond Street Hospital changed its tune. The hospital, where Charlie Gard has lived and received treatment since his diagnosis at eight weeks of age, is now saying that they have received new information about potential experimental treatment for Charlie — and that they are going to petition the European Court of Human Rights to re-hear Charlie’s case.
“Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment. And we believe, in common with Charlie’s parents, it is right to explore this evidence.”
According to the hospital, the money that Charlie Gard’s parents raised, or the widespread international support the terminally ill boy has accumulated, did not influence their decision to seek a new hearing with the High Court. Rather, the Great Ormond Street Hospital says that they are now and have always simply been doing what is best for Charlie.
“This is not an issue about money or resources, but absolutely about what is right for Charlie.”
The hospital still believes that Charlie Gard has suffered “catastrophic and irreversible brain damage” and that experimental nucleoside therapy will be “futile and prolong Charlie’s suffering.” However, they have now expressed a willingness to reconsider the idea that the experimental treatment may actually improve Charlie Gard’s quality of life.
While it has never been tested on anyone with Charlie’s specific form of mitochondrial depletion syndrome, the treatment has been successful in at least one similar human case. The doctor behind the treatment, known publicly only as “Dr. I,” has expressed wavering opinions when it comes to the potential of his treatment’s success.
“There is no direct evidence, but there is a theoretical scientific basis for saying it could.”
The Great Ormond Street Hospital has not publicly identified the “two international hospitals and their researchers” who influenced the institution to potentially change its mind about Charlie Gard and his withdrawal of care. However, one has been identified via the media as likely being New York-Presbyterian Hospital/Columbia University Medical Center.
Earlier this week, the hospital reportedly offered to treat Charlie either in NYC or by providing the experimental drug to Great Ormond Street Hospital for use at their facility. According to Charlie Gard’s mom, she believes that her son could one day be “perfectly normal,” although she hasn’t provided any factual or scientific evidence to back up her claim.
“There is potential for him to be a completely normal boy, but we don’t know, as you just don’t know until you try. There’s around a 10 percent chance of this working for Charlie.”
University of Cambridge legal scholar Claire Fenton-Glynn has a much different take on the tragic case of Charlie Gard. She claims that these new offers of help have no legal leg to stand on and that they may, in fact, be contrary to Charlie’s best interest.
“The central issue in this case is not the availability of treatment — there has always been a U.S. hospital willing to treat him — but, rather, that the courts have determined it is not in Charlie’s best interest.”
While his parents are hopeful that their son may get a last-minute reprieve, Connie Yates confirms that she has been preparing to say goodbye to Charlie and that she’s been collecting and saving mementos such as hair and nail clippings as she’s waited for doctors to withdraw life support from little Charlie Gard.
[Featured Image by Connie Yates/GoFundMe]