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US Rep whose baby miraculously survived behind Charlie Gard residency

July 20, 2017

U.S. Congresswoman Jaime Herrera Beutler knows better than most people what Charlie Gard’s parents are going through.

The pro-life Republican from Washington state has a daughter who was diagnosed with Potter’s syndrome, a typically fatal condition, while she was in the womb.

Abigail Beutler now is 3 years old and able to walk the halls of Congress with her mother, thanks to an experimental treatment. Abigail is the first known person to survive birth without kidneys.

Like the Beutlers, Charlie Gard’s parents want to try an experimental treatment for his mitochondrial disease. Chris Gard and Connie Yates said they know the chance of the treatment working is slim, but they want to try anyway for Charlie’s sake.

However, the British courts and hospital have refused to allow them to transfer their son to another hospital for the treatment. About a month ago, the European Court of Human Rights ruled that the hospital can remove Charlie’s life support and allow him to die. More recently, the hospital agreed to consider new evidence involving Charlie’s condition before taking him off the ventilator.

Charlie’s case has drawn international attention and support from world leaders, including Pope Francis and President Donald Trump.

 

On Monday, Beutler led an effort to make it easier for Charlie’s parents to bring him to the U.S. for the experimental treatment, CNS News reports. The House Appropriations Committee approved her amendment to grant Charlie and his parents U.S. residency.

“I strongly believe, having faced similar circumstances, that parents have the most at stake when it comes to standing up for their children,” Beutler said before 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.”

She said her amendment would not add to the total number of visas allowed or make the family eligible for U.S. medical assistance. Charlie’s parents have raised more than $1 million for his medical care.

“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,” she said.

Whether the Congressional move will help remains to be seen. British courts – not Charlie’s parents — are deciding where he may and may not be taken.

The Evening Standard reports:

Whitehall sources said the visa offer would make no difference as he is not allowed to travel to the US under an existing court direction.

Mr Justice Francis, the High Court judge who has been hearing appeals by Charlie’s parents Connie Yates and Chris Gard for him to be offered an experimental therapy by a US doctor, has to be informed of any plans to move him from GOSH.

This week, a United States specialist on mitochondrial disease flew to London to examine Charlie. Details from the examination have not been made public yet. A judge is scheduled to review the examination next week and determine whether Charlie will be allowed to try the experimental treatment.

Charlie’s parents also released a photo this week that shows him appearing to look at a toy; the hospital says the boy is blind and cannot move.

The hospital maintains that Charlie’s case is hopeless because he does not have a chance of any “quality of life,” according to the Birmingham Mail.

Beutler and her husband heard similar words from doctors before their daughter Abigail was born.

Four years ago when she was pregnant with Abigail, Beutler said she and her husband, Dan, were at the doctor’s office for a prenatal visit, thinking they would learn the sex of their unborn baby.

Instead, doctors informed them of devastating news: Their unborn daughter, Abigail, had no kidneys and would die in the womb.

Someone who read their story in a newspaper contacted the Beutlers and told them about an experimental treatment involving a saline injection that could help their daughter survive.

The Beutlers said they contacted many different hospitals before one, Johns Hopkins, agreed to meet with them. Even then, the family said it took a lot of urging before doctors agreed to try the experimental treatment on Abigail.

It ended up saving their daughter’s life.

Charlie’s disease and his case are different, but his parents are still clinging to hope that an experimental treatment will help him, too.

Yates told told Good Morning Britain recently, “I’ve heard from doctors that there’s around a 10 percent chance of this working for Charlie so I think that’s a good enough chance to take.”

She said she does not want her son to suffer. She said it has been “absolute living hell” to wait and wonder when the hospital might end his life support.

“He’s our own flesh and blood and we don’t even have a say in his life whatsoever,” Yates said. “We are not bad parents, we are there for him all the time, we are completely devoted to him and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”

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