Why Charlie Gard’s Life Was Worth Fighting For

National Review ^ | July 28, 2017 | Brad Wenstrup

[Morgana]

The search for cures continues, and bureaucrats should not stand in the way. Five grueling months went by as Chris Gard and Connie Yates battled with the U.K. courts for the right to fight for their son’s life. This week, they withdrew their petition seeking to bring Charlie to the U.S. for experimental treatment. The fight for little Charlie’s life caught the attention of the world, and now commentators and talking heads are busy casting blame. The case can be made that the delay caused his death. At the very least, the drawn-out court battle deprived Charlie’s parents of the opportunity to see whether experimental treatment might have saved his life. “A whole lot of time has been wasted,” Ms. Yates said, through tears. “We are sorry we could not save you.” Regardless of blame, a little boy has lost his only chance at life. The heart-wrenching truth is that thousands of children around the globe die every day, for a myriad of reasons. But that does not lighten the weight of this death. The individual is what defines our humanity. Charlie’s short life is a reminder that every human life — no matter how great or small, young or old — has inherent dignity. Every life is worth fighting for.

[exDemMom]

I hate to say it, but that kind of blurb is fairly standard within the research community. Any of the researchers on my staff, or that I’ve ever worked with, would have a biographical sketch along those lines. And I would hesitate before calling him “one of America’s best”—I’m not even sure what that means, honestly.

Also, every one of the scientists on my staff devotes their life to experimentation. It’s what we all got PhDs for...

As far as the little boy who supposedly saw great progress because Hirano fed him nucleotides—I haven’t actually seen solid evidence on whether that has actually had an effect on the boy’s disease. And I have no idea if the FDA has condoned such “treatment” or if an ethical review panel has okayed it. The reality is that Hirano has only tested his prototype drug in cell culture and in mice; that is what is published in the medical literature:
https://www.ncbi.nlm.nih.gov/pubmed/28318037
“Deoxycytidine and Deoxythymidine Treatment for Thymidine Kinase 2 Deficiency.”
This is not the same disease that Charlie had. The treatment that Dr. Hirano had said he could give to Charlie has actually not been tested for Charlie’s disease ever, and for biochemical reasons, is unlikely to work. I will note that the protodrug did not cure the mice, but delayed their death.

It is significant that Hirano never submitted an application to the FDA to try this protodrug on Charlie, had not submitted an experimental protocol through a review board, and had never actually gone to examine Charlie himself when invited to do so in January. If I give him the benefit of the doubt and assume that he had no ulterior motives, then I have to think that he never intended to actually treat Charlie, and that he may have gotten pulled into this situation far more deeply than he had ever anticipated. He also said (court testimony) that there was a small chance the “treatment” would improve Charlie’s muscle tone—which is far short of the miracle cure the parents (and much of the public) apparently still believe was kept from Charlie.

In any case, the judge in this case could have avoided a lot of media circus and heartache for Charlie’s parents had he disallowed any testimony from anyone who had not personally examined Charlie.

I sincerely hope that when Charlie’s parents begin to distance themselves from the immediate pain of their loss, they will begin to think rationally and realize that the evidence presented in court showed that there never was a hope of a cure for Charlie. As long as they believe he was cheated out of a miracle, their psychological health is going to suffer.