NRL News

House passes amendment granting permanent resident status to Charlie Gard and his family

by | Jul 19, 2017

By Dave Andrusko

Charlie Gard’s parents have released this heartbreaking image of their terminally ill son as they spend their last few hours with him (Picture: Featureworld)

(Picture: Featureworld)

Supporters of Connie Yates and Chris Gard continue to make it possible for the hospital that is refusing to allow them to move their son to the United States for experimental therapy to gracefully retreat from its position that Charlie Gard should be “allowed to die with dignity.”

Pro-life Rep. Jeff Fortenberry (R-Neb.) tweeted out

“We just passed amendment that grants permanent resident status to #CharlieGard and family so Charlie can get the medical treatment he needs.”

If the presiding judge, Justice Nicholas Francis, will allow Connie and Chris to move Charlie out of the Great Ormond Street Hospital (GOSH), this means Charlie will receive the nucleoside therapy Dr. Michio Hirano believes can help their critically ill, nearly one-year-old child.

Dr. Hirano is a world renowned expert in Charlie’s rare form of mitochondrial depletion syndrome. He flew into London and on Monday reviewed the brain scan taken the day before and other relevant test results.

Yesterday, joined by an outside expert from the Bambino Gesu Hospital in Rome, Dr. Hirano met with staff at GOSH at a meeting that included what was described as an “independent chair” and Connie Yates. A transcript from their meeting will be given to Justice Francis who presumably will make a ruling next week whether Connie and Chris can move Charlie to the Columbia University Medical Center (CUMC) where Dr. Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic.

As reported previously in NRL News Today, after thirty years of studying this condition, the Harvard-trained Dr. Hirano has pioneered an oral additive that mitigates the MDDS deficiency in which his cells cannot process and replenish essential energy.

In testimony given last week via videoconferencing, Dr. Hirano said there was an “11% to 56% chance of clinically meaningful improvement” in muscular function with the proposed treatment and that he expected a “small but significant” improvement in Charlie’s brain function.

GOSH thus far has not budged an inch from its position (reiterated on its webpage) that Charlie has “no quality of life and no real prospect of any quality of life.” Heretofore, Justice Francis has not only taken the hospital’s conclusions as gospel, he has also expressed more than a little irritation that others disagree with GOSH’s recommendations.

Interestingly, on a brighter note, the New York Times, of all places, ran an op-ed today written by Kenan Malik.

Malik came down on the parents’ side, observing that in Charlie Gard’s case, “the choice is between a possible future and a definite non-future. There is no future after death, and if life support is ended, Charlie will have no interest to debate.”

Categories: Infants