This week Charlie Gard's parents announced that they abandoned the legal struggle to take their son to the United States where he could receive an experimental treatment that might save his life.
During these months, we have followed the history of the Gard family step by step and we have been moved by each of the news that came to us. But, fortunately, it's over. Why was it time to throw in the towel?
At first, he was a (apparently) healthy child
Charlie is a ten month old baby suffering from "mitochondrial depletion syndrome" and that he has spent more than half of his life hooked on a respirator in a London hospital. He can neither see nor hear; can't move, can't breathe, can't swallow without help.
Mitochondrial diseases, in general, are disorders caused by the deficiency of one or more proteins of the cell mitochondria. Mitochondria are tiny cellular organelles that are responsible for 'providing energy to the system' and that, despite their small size (and the tiny amount of DNA they provide), can produce gigantic health effects.
We know more than 150 mutations with very different effects: loss of motor control, muscle weakness, pain, stunted growth or problems in almost all organs of the body. Charlie's syndrome is called depletion or DNA depletion because entails the "decrease in mitochondrial DNA content".
This disease (of which there are only 17 patients in the world) can affect some specific organs or, as in the case of Charlie Gard, all the tissues of the body causing a massive and multisystem failures.
But perhaps the most dramatic is that that exhaustion can be seen live and direct. Charlie's parents received a perfectly healthy child the first week of August and in the next eight weeks they attended how a carambola of fate (a genetic mutation they did not know) was taking their son in front of his eyes.
When to throw in the towel?
It was at that moment that they learned that their son's illness had no treatment. Not a real treatment at least. There are symptomatic remedies and, in cases where depletion only affects one organ, some type of transplant can be studied. The doctors, almost from the beginning, made it clear that it was a matter of months.
But there are reasons that the heart does not understand and, what do you want me to say, it is logical that parents will cling to any thread of hope. Y the last thread was an experimental therapy of nucleosides designed for a variant of the disease that is not exactly what Charlie suffers. It was not a whim, there were numerous experts behind. The 'theoretical possibility' that it worked was enough to collect more than 1.5 million euros from 80,000 different people.
However, and in the same way that there is a moment to keep fighting, there is a time to throw in the towel. And, at best, experimental therapy was late for Charlie who already had irreversible brain damage and many of his organs were completely destroyed.
That is to say, even if the therapy worked (something very unlikely) Charlie's quality of life was not going to improve. It would be, experts agree, to extend the suffering of a one-year-old child unable to move, breathe or feed himself.
That is what Michio Hirano, the neurologist at Columbia University responsible for experimental treatment, explained to him this weekend, and what has ended up convincing them: the certainty that even in case of success Charlie's life was going to be a long and sad suffering.
Time to say goodbye to Charlie and to continue working so that next time we have the necessary treatment.
