In there

Charlie Gard has died, poor little soul, just a week from his first birthday.  His memory for a blessing.  He never really had a chance.  Genetics dealt him the cruellest of hands:  incredibly rare, inherited mutations in the gene RRM2B.  Almost from birth, he was dying.  Week by week, he suffered devastating seizure-storms, leading to severe, irreversible, progressive brain damage.  He was deaf.  He was functionally blind.  He lost the power to move on his own, to breathe. 

Like Charles Wallace Murray’s in A Wind in the Door, his mitochondria were failing, his cells and organs shutting down; but unlike in that story, there was no war in heaven for his sake—only a terrible court battle.

Charlie spent most of his short life at Great Ormond Street Hospital for children (to which J. M. Barrie left the copyright to Peter Pan)*.  Back in January, his doctors there were willing to try an experimental American treatment with nucleosides, one that had never been attempted on a child with his specific rare syndrome.  (Only 16 cases have ever been diagnosed.)  But before they could begin, the infant’s condition took a sharp downward turn.  It was concluded, regretfully, that further treatment would be futile.  Would be cruel.

But the parents had caught fire with hope.  They knew—just knew—that if they could get Charlie to that doctor in America, he would be cured.  They knew their beautiful, unblemished child was in there.

In there is powerful.

It led Anne Sullivan to work miracles with Helen Keller.  Yet that belief in the real child, a perfect mind imprisoned in a damaged brain, has also led to the barbaric torture of neurologically atypical children with “treatments” like bleach enemas and chemical castration; it has led to profoundly disabled people being used as flesh planchettes, to spell out the manipulator’s fantasies of buried genius or atrocious abuse.  In there is hope.  Humans have sat beside whirring, blinking, whooshing bedsides, willing a beloved person to be in there, to wake up.

In Charlie’s case, in there led to agonizing litigation.  His doctors at GOSH (“The child first and always”) thought he might be in pain.  They considered his case hopeless.  They petitioned to have his ventilation withdrawn, to let him slip away in peace.

His parents fought like tigers for the nucleosides.  They simply would not believe that Charlie could be suffering, could not be made better somehow.  They believed (so they told the press) that he liked to watch videos with them.  Their agony of hope was moving and persuasive:  they crowdfunded £1.3 million to bring Charlie to America.  Even now their denial is obstinate:  “had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy.”

Then everyone jumped in.  Right-to-lifers stalked the hospital and court with signs.  They sent thousands of abusive messages, even death threats, to the pediatric staff at GOSH.  Small Hands—spit!— tweeted his enthusiasm.  Two Congressmen—taking a moment from strangling healthcare for millions of less well-funded babies—offered Charlie American citizenship.  (I can’t even.)  The Pope offered him a Vatican passport.

And then the miracle-worker himself, Dr. Michio Hirano, descended.  He admitted to the court (to its “increasing surprise and disappointment”) that he hadn’t so much as looked at Charlie or his brain scans or his records before promising wonders.  “Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.”

He may be a very good wizard, but he’s a very bad man.

The report concludes:  “Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.”

I hope his parents devote that £1.3 million to help those others.  That would truly make his memory a blessing.

Nine

*The best endowment ever.