Reflections From an Insider on Charlie Gard and Socialized Medicine | RealClearPolicy

My son was fortunate enough to undergo this treatment -- called nucleoside therapy -- and today he is one of 16 children with the disease who have made significant progress. On Dr. Hirano's regimen Arturito’s respiratory function and strength have improved noticeably. He can now move his fingers, hands, and toes, and sit (with support) at a 90 degree angle for 90 minutes compared to a 45 degree angle for 15 minutes previously.  Most importantly, five years after we were told to prepare for his “comfortable death,” my son is alive.

I have since joined Dr. Hirano, who is also father of two young girls, and become an advocate for this protocol.

via www.realclearpolicy.com

It's easy for me to say, but this heroic treatment doesn't seem like it yields much of a life for the baby, so much as some consolation for the parents. I would add that a lot of this extreme clinging to life seems to result from a sort of existential despair, as if this rather, let's say, compromised life is all there is. That might be so. But if it is, surely there's something to holding on to it only so much, being able to let go of it with grace. And if it's not all there is, so much stronger the case to not fight the end for all you're worth.