Rep. Trent Franks (R-AZ) and Rep. Brad Wenstrup (R-OH) announced Friday that they will be introducing legislation this week to help 11-month-old Charlie Gard who suffers from a rare genetic condition, mitochondrial depletion syndrome. The congressmen want to make the critically ill baby a lawful permanent resident so that he can come from the UK for experimental treatment.
"Despite Charlie’s heartbreaking condition, his parents have refused to give up hope,” the congressmen write. “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.”
“Our 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,” they explain.
The Great Ormond Street Hospital in the UK, where Charlie is receiving life support, planned to remove his life support against the wishes of his parents, who had raised money to take him to the United States for an experimental treatment. The European Court of Human Rights sided with the hospital, ruling that it would not be in his best interest to go to the United States and receive the treatment.
After an international public outcry against the decision that included Pope Francis, President Trump, and Cher, the hospital is keeping Charlie on life support and filing for another hearing in light of new evidence regarding experimental treatment options.
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The parents attended that highly anticipated hearing Monday to plead their case. The judge gave them 48 hours to present new evidence of how the experimental treatment will benefit their son.
“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?” The congressmen asked in their statement.
“Every human life has dignity, including the lives of those who cannot speak up for themselves,” they conclude. “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.”
Charlie’s mother Connie Yates spoke out Sunday while delivering a petition with more than 350,00 signatures asking the hospital to let Charlie go to the U.S. for treatment.
"He's our son, he's our flesh and blood and we feel that it should be our right as parents to decide to give him a chance at life," Yates said. "For a medication that is just an oral medicine, no known major side effects, you know, there is nothing to lose. He deserves a chance."
Charlie's father, Chris, emphasized that there is no evidence Charlie has "catastrophic brain damage," saying, "He should have had this chance a long time ago. They said it wasn't fair to leave him on a ventilator for three months with a treatment that they didn't think was going to work, he's now been left for seven months with no treatment, so he could have had it twice over. He deserves this chance at last and hopefully we will get it."
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