Lawmaker Whose Child Miraculously Survived Proposes Amendment Offering Charlie Gard US Residency

By Patrick Goodenough | July 20, 2017 | 5:19 AM EDT

Charlie Gard, the focus of a drawn-out legal battle with a London hospital, has a rare genetic condition. (Photo: Charlie Gard GoFundMe page)

(CNSNews.com) – A push in Congress to grant residency in the U.S. to the terminally-ill British baby Charlie Gard and his parents is moving ahead, driven by a lawmaker whose own fight to save her severely-ill baby had a happy outcome.

The House Appropriations Committee on Monday approved by voice vote an amendment to the FY 2018 Department of Homeland Security appropriations bill granting lawful permanent residence, to enable the infant to receive pioneering medical treatment in the U.S.

Chris Gard and Constance Yates have been engaged in a drawn-out legal battle with a London hospital since a judge last April ruled that their baby boy, who has a rare genetic condition and is on life support, should be allowed to die.

That same judge has indicated he will issue a new ruling next Tuesday, after he reviews the evaluation of an American neurology specialist, Dr. Michio Hirano of Columbia University Medical Center, on the potential treatment known as “nucleoside” therapy.

Charlie’s parents have raised more than $1.7 million for the treatment on the crowdfunding website GoFundMe.

Rep. Jaime Herrera Beutler (R-Wash.) and her husband Dan with their newborn baby Abigail in July 2013. (Photo: Facebook/Jaime Herrera Beutler)

The amendment offering U.S. residency to them and their child, whose will turn one on August 4, was proposed by Rep. Jaime Herrera Beutler (R-Wash.)

“I strongly believe, having faced similar circumstances, that parents have the most at stake when it comes to standing up for their children,” she told the committee ahead of the vote.

 

“It would allow – cut through some of the bureaucratic paperwork and allow Charlie to be a lawful permanent resident in the U.S. in order to ease their path to receive treatments that could save his life.”

Herrera Beutler can identify with what Charlie’s parents are going through better than most people: Four years ago she was told her unborn baby girl had Potter’s Syndrome, a rare and usually fatal condition that affects development of the kidneys.

She and her husband Dan later recalled a doctor advising them to have an abortion, but the pro-life congresswoman chose to “contend” with the challenge and fight for Abigail’s life.

Kidneys are essential for the production of amniotic fluid in the womb, and most babies with Potter’s Syndrome carried to term are stillborn or die very soon after death, usually from respiratory failure resulting from underdeveloped lungs.

But the Beutlers managed to convince a doctor to give Abigail saline injections in utero to fight the condition – an experimental treatment that other doctors were reluctant to consider.

The “miracle” child, who received a kidney from her father last year, turned four last week. She is believed to be the first baby to have survived birth with no kidneys.

Abigail was on her mother’s lap during the House Appropriations Committee voting, according to a photo she posted on Twitter.

 

Should it pass into law, Herrera Beutler’s amendment will allow Charlie Gard and his parents to enter the U.S. within two years of its enactment.

The measure also instructs the federal government to reduce by three the number of immigrant visas issued in the next fiscal year to applicants from the country of birth of the trio.

“It would not add to the total number of visas allowed,” Herrera Beutler explained. “It would not be making them eligible for assistance – they’ve raised their money.”

“It would just help send a message I believe, as this case is being re-looked at, and re-reviewed, that should the U.K. decide to release this child that we welcome him with open arms and that we have medical teams standing by that would seek the opportunity to treat him and make his life better.”

Charlie’s plight has attracted international attention, with Pope Francis and President Trump among many expressing support.

“If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so,” Trump tweeted early this month.

Patrick Goodenough
Patrick Goodenough
Spencer Journalism Fellow