Congresswoman and mother of her own “miracle child” offers amendment to grant residency to Charlie, Connie, and Chris

By Dave Andrusko

By all indications, Justice Nicholas Francis will hand down his decision, potentially sealing the fate of little Charlie Gard, next Tuesday. The presiding judge is presumably evaluating the results of the latest tests on the nearly one-year-old Charlie and the analysis of Dr. Michio Hirano, a world renowned expert in Charlie’s rare form of mitochondrial depletion syndrome, who flew into London Monday.

The transcript of what Dr. Hirano, a doctor from Bambino Gesu Hospital in Rome, and the medical team at the Great Ormond Street Hospital (GOSH) found is a closely guarded secret, as it should be.

Last week Dr. Hirano, who serves as Chief of the Neuromuscular Division and Co-Director of the Columbia University Medical Center Muscular Dystrophy Association clinic, testified via videoconferencing there was an “11% to 56% chance of clinically meaningful improvement” in Charlie’s muscular function with the proposed treatment and that he expected a “small but significant” improvement in Charlie’s brain function.

Charlie’s parents, Connie Yates and Chris Gard, are fighting GOSH which is adamant that their son not be moved to the Columbia University Medical Center where Dr. Hirano would administer nucleotide bypass therapy, which he has pioneered.

The hospital states categorically that nothing can be done for Charlie, that transport to the U.S. would only increase his suffering, that Charlie has “no quality of life and no real prospect of any quality of life,” and should be “allowed to die with dignity.”

As NRL News Today discussed yesterday, the House Appropriations Committee approved an amendment to the Department of Homeland Security appropriations bill to grant Charlie, Connie, and Chris lawful permanent residence. (It was misreported in some outlets yesterday that the amendment had passed the entire Congress.) If the House and Senate pass the amendment, and Justice Francis allows Charlie to leave England, this would pave the way for Charlie to receive what is admittedly experimental therapy.

What we didn’t know yesterday added an entirely new dimension to the campaign to give Charlie a chance against the advice of medical “experts.”

In many ways the resemblances are uncanny.

CNS News reported that the residency amendment was proposed by pro-life 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.

NRL News Today readers may recall the story of their “miracle baby.”  Jaime and Daniel Beutler’s unborn daughter, Abigail Rose, was diagnosed with a condition for which (they were told) there were no treatment options. They were gently advised to abort the child whose condition was supposedly “incompatible with life.”

But they presevered against pushback from many doctors. They went public (just as did Connie and Chris) with their baby’s situation–she had no kidneys to produce amniotic fluid without which Abigail Rose’s lungs would not develop.

Word reached them of an experimental therapy (kind of like nucleoside therapy). They finally found one doctor (like Dr. Hirano) who would inject a simple saline solution into her uterus which mimicked the effect of amniotic fluid.

CNS’ Patrick Goodenough reported

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.

What a story! Stay tuned to NRL News Today. We will do our best to keep you up to date.