Charlie Gard © Charliesfight.Org

FORUM: Goodbye Little Charlie, 'Ambassador of Life'

A Week before His First Birthday, Life of Charlie Gard Was Ended

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The news of Little Charlie Gard’s death, just a week before his first birthday, has left a great void and many questions given the moral, legal and political implications it aroused.
The event, which took on international dimensions, involving the Vatican and the United States, left much perplexity in public opinion. Many of us carried forward a battle for life, requesting health structures to intervene to meet the special needs of the little one, suffering from a rare genetic disease, a form of syndrome of depression of the mitochondrial DNA, an extremely rare pathology that affects the cells causing the progressive weakening of muscles and vital organs, with consequent brain damage for which at present no cure exists.
The Strasbourg Court judged by a majority that the British jurisdictions could legitimately hold that it would not be in the interest of the baby to continue to live with artificial respiration or to receive experimental treatment. According to the British judges, such cures would not have procured any benefit and the child would have suffered much more.
Now the event seems concluded, but the void remains not only in the heart of the parents, who did everything to assure their little one hope and the possibility of attempting the impossible.
The Court hid once again behind the ascertainment of the absence in Europe of consensus in matters of the end of life or of euthanasia, to accord to the United Kingdom a wide margin of appreciation on the protection of life of sick persons, and to no avail were the words of the Pope and Trump’s effort in granting American citizenship to little Charlie.
Now, as the grief-stricken parents stated, “Charlie is dead knowing that he was loved by thousands of people.”
Connie and Chris Gard will use the money they raised for more research on this disease, so that one day other children suffering from mitochondrial depletion can live a little longer and, perhaps, even be cured.
As Pope Francis said, “life is defended always, also when it is wounded by disease.” There is no such thing as a life that is not worthy of being lived. Here is the answer to the “disposable culture” that pervades today’s society, closed in the egoistic solitude of personal interests, without being able to look around and see the many hands that jut out with a manifest request for help and hospitality.
The miracle of life traces in the sky a serene rainbow and becomes a constant warning on earth and, in the name of little Charlie, scientific studies and research are undertaken capable of keeping alive to the end the gift of life, which is not measured with strength or with health. Man’s dignity does not depend on his capacity.
The courageous parents and doctors sought to understand the cause of that dark malady that impeded living and what therapies were possible to put into play. They too are the icon of a humanity that does not give up and that fights a hard battle every day.
A new angel of Heaven protects with his wings the frail humanity remembered of children that cannot come to light; those who are born but are used as “things” by “people without scruples; little patients that are born and witness that “God is not yet tired of man.”
Charlie, little angel, as an “ambassador of life,” gives us the wings to learn to fly and to measure life’s events with that look charged with the hope that the saints have.
A new star shines in the sky and brings the comfort of light in the dark and sad night of “this opaque atom of evil.”

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Giuseppe Adernò

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