Today, August 4, 2017, would have been Charlie Gard’s first birthday.
But because of an overbearing legal system and a liberal frame of mind that robbed two parents of the freedom to dictate their own son’s healthcare options, Charlie and his family will not celebrate today.
A rare mitochondrial disease made it impossible for Charlie to breathe on his own and gave him severe brain damage that many saw as irreversible.
Charlie’s parents, nevertheless, saw a full life’s potential for their little boy, and hoped to engage him in an experimental therapy that could have potentially reversed the devastating and debilitating symptoms of his seldom-treated condition.
The UK courts, however, had other ideas—under the guidance of the Great Ormond Street Hospital (GOSH), they were advised to determine, via the legal system, that Charlie should be removed from his life support rather than suffer any longer.
“A world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients,” it argued in court.
“Charlie’s parents fundamentally believe that they alone have the right to decide what treatment Charlie has and does not have,” GOSH said. “They do not believe that Great Ormond Street should have had the right to apply to the Court for an independent, objective decision to be made. They do not believe that there is any role for a judge or a court.”
Well, yes… as his parents, they SHOULD have the sole right to decide what treatments Charlie receive.
This wasn’t an unreasonable circumstance. Doctors outside of the UK had confirmed, based on Charlie’s MRIs, that he was a candidate for the treatment they’d previously tested on this particular mitochondrial issue.
As the court battles came to an end, it was concluded that with the help of United States’ Congress and activists across the globe, Charlie would see treatment in the U.S.
However at that point, his parents determined it was too late. Recent MRIs had shown his brain damage was far from reversible, and the fear that his quality of life would be very low ultimately led them to decide against the experimental treatments.
Charlie was removed from his life support and laid to rest last week.
RIP, Charlie Gard.