Two Republican members of Congress said they plan to introduce legislation next week that would grant lawful permanent resident status in the United States to critically ill baby Charlie Gard and his parents to allow the child to leave the U.K. and receive experimental treatment in America.
“Despite Charlie’s heartbreaking condition, his parents have refused to give up hope,” said Reps. Brad Wenstrup (OH) and Trent Franks (AZ). “They have advocated for him fiercely. They have raised over £1 million to pay for their son to receive experimental treatment in the United States. They have kept fighting for his life.”
When Congress returns to session next week, the two lawmakers say their bill “will support Charlie’s parents’ right to choose what is best for their son, by making Charlie a lawful permanent resident in the U.S. in order for him to receive treatments that could save his life.”
Wenstrup and Franks continued in a statement:
Should this little boy to be ordered to die — because a third party, overriding the wishes of his parents, believes it can conclusively determine that immediate death is what is best for him?
Every human life has dignity, including the lives of those who cannot speak up for themselves. When government is able to overrule a parent or guardian in determining a patient’s best interest, every vulnerable patient is put at risk. We offer Connie Yates and Chris Gard our heartfelt support as they seek to care for their son.
In a statement to the Washington Post, New York Presbyterian Hospital/Columbia University Irving Medical Center said Thursday it would be willing to admit Charlie and evaluate him “provided that arrangements are made to safely transfer him to [its] facility, legal hurdles are cleared, and [it receives] emergency approval from the FDA for an experimental treatment as appropriate.”
Alternately, the New York hospital said it could ship an experimental drug to London’s Great Ormond Street Hospital, where Charlie is a patient, along with instructions for its administration, as long as the FDA approves.
Charlie is 11 months old and suffers from infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome – a very rare and terminal genetic disorder. Specialists at Great Ormond Street Hospital said they had exhausted all treatment options and told Charlie’s parents, Connie Yates and Chris Gard, their son would be removed from life support.
The London hospital declined assistance from the Vatican hospital, citing decisions by the U.K. domestic courts and the European Court of Human Rights, both of which ruled that removal from life support was in Charlie’s “best interests.”
Charlie’s parents, however, raised about $1.7 million privately to take their son to the United States for experimental treatment. In the system defined by principles of socialized, government-run health care, the hospital and both the U.K. domestic courts and the European Court of Human Rights have ultimate control over Charlie’s healthcare decisions. Consequently, the parents’ pleas to remove Charlie from the hospital, and even their request to allow the baby to return home with them for his final hours, were all rejected.
The parents’ hope was renewed, however, after U.S. President Donald Trump and Pope Francis tweeted their desire to help Charlie and his parents:
To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.
— Pope Francis (@Pontifex) June 30, 2017
If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.
— Donald J. Trump (@realDonaldTrump) July 3, 2017
“The support from the Pope and the President has given us hope,” said Charlie’s mother, according to the Daily Mail. “They are traditional men who believe in the family. They believe in our case and understand why we believe it is right to continue fighting so hard to save Charlie.”