For Chris and Connie, parents of the small Charlie Gard, the one that just passed is destined to be the last weekend in the company of their son. An act of clemency by the doctors to the Great Ormond Street Hospital, where the almost eleven months child is hospitalized with a rare genetic disease, granted to the two young parents in London a few more hours before removing the plugs that keep him alive.
The couple has invested this precious time in pampering, caresses, kisses and perhaps in tears keeping away the cameras that in recent days have insistently linger on their tragedy, propagating the private pain for the public international debate.
This case has aroused strong emotions, as well as marked divisions between those who consider the choice of doctors to shut down the machines that feed the life of the child appropriate because he is suffering from a disease that is considered painful and “incurable” and those who, on the contrary, are of the opinion that has been perpetrated a violation of parental responsibility by preventing Chris and Connie of travelling the path of hope by taking their son – at their own expenses – to the US for an experimental therapy.
Many words have been spent by experts and mere observers. Rivers of ink have been poured. But nothing has more value than the crude witness of those who have lived on their own skin experiences that have significant similarities with the case Charlie Gard.
“Mele” skillful painter
There are children, adults, parents with the heart full of love whose stories enclose the hope and the triumph of life over death. In Massarosa, in the province of Lucca, a palette of colors denies the dark deadly verdict that has been delivered by doctors and judges on the fate of baby Charlie. It is the color palette that Emanuele Campostrini, said “Mele”, uses to express his talent as a painter.
“Mele” is nearly nine years old and shares with Charlie Gard the same genetic disease: the syndrome by depletion of the mitochondrial DNA. In the moment in which the fate of Charlie started to be scanned by the rulings of the courts, first by the British ones and then by those of the European Court of Human Rights, Chiara, mother of “Mele” intervened with a video filled with humanity to give hope to the small baby condemned to death. “Be human and be courageous, let Charlie Gard live. Do not judge his life until he has lived it“, is the appeal of Chiara.
Who explains that even her son “was connected to the ventilator to breathe” and that “the one that accordingly to the doctors was a desperate condition, it has then become the fertile soil in which his extraordinary personality matured”. Yes, because “Mele” communicates via a PC, plays chess and paints paintings. “And to the students that have invited him – continues the mother – he explained what is art: ‘A talent that comes from the heart’“.
And from the heart also come the final words of the message of Chiara: “Nobody can tell us how long he will live, nobody makes forecasts on the future anymore, but his life was respected as it was. And his present is a beautiful one“. The video of the Tuscan mum has touched the heart of Chris and Connie, who immediately contacted her to thank her.
Love: “The biggest medical remedy” to heal a disabled child
The words of Giovanni Parentignoti, dad of Sergio, a tetraplegic boy twelve years old, have not yet reach the other side of the English Channel. The disappointment of this Sicilian parent regarding the case Charlie Gard found space on the pages of Avvenire. Giovanni is firm and straightforward: “It is the story of useless mouths to feed of the Nazi eugenics, the right to decide who shall live and who shall die, the disabled person perceived as a weight for the hospitals and for the State. So, let them die, they are ugly to see in a perfect society like ours”.
Speaking about his son, he explains that “Sergio depends on machines, but he lives and nobody can decide for him if his life is worth being lived”, even “science and doctors”. And in a more sharp way he adds: “Who has the right to decide that Sergio would be better dead?”. That is why Giovanni shivers watching what is happening in London in these hours: “Tomorrow a doctor or a judge might say ‘Sergio must die for his own good’, referring to the case of Charlie“.
This Sicilian dad would then let the “Lords of death” who have decided that the life of Charlie “is not worthy of being lived”, know his and his wife experience, who in the last twelve years treat one hundred per cent, their disabled child, “with the biggest medical remedy” that exists, “love”.
The former Italian Minister considered dead at birth
Even Antonio Guidi, which today is no longer a child, is disabled since birth. In over seventy years of life he had many experiences, and he has held prestigious institutional positions. Doctor neurologist specialized in Child Neuropsychiatry, already university professor, he was Minister for the Family in the mid-nineties, Undersecretary to the Ministry of Health between 2001 and 2005 and collaborator of Gianni Alemanno, Mayor of Rome until 2012.
On Facebook Guidi intervened on the case Charlie with an eloquent comment: “When I was born in 1945 everyone considered me dead even if a small, faint beat was hiding in my chest. The doctors did not believe in me … but my parents did… and they were right!!”.
And then again: “For many years the best doctors in the country repeated ‘he will never understand anything, he will not speak, not walk, madam… your son is better if he dies. Inside me I was screaming for that silence that I could not break speaking, but I could understand everything!! At the age of 4 I started to speak… and at the age of 11 to walk. Grueling hours of physiotherapy, awfully expensive, but at the end I was rewarded… in spite of the skeptical, heartless and hopeless science that considered me doomed and had condemned me many times”.
“In these days – continues Guidi – it breaks my heart to think about the small Charlie Gard and I think about what would have been my fate if this cruel European Court of human rights had been able to decide my destiny“. According to the former minister, “crushing the desire of living, the hope of these difficult lives, deprives humanity of one of the most important missions of life itself: the one of sustaining and helping each other. This cruel drift is intended to involve sooner or later all of us, none excluded, nobody can declare themselves immune from being involved in first person”.
The battle for life against the “Lords of death”
Guidi finally thinks about “baby Charlie’s parents who have believed and still believe in him… and an even more great thought at this small warrior to which someone does not want to give the opportunity to conduct his battle”.
In fact, the “Lords of death”, to paraphrase the daddy of Sergio Parentignoti, are to prevail in London. But the media echo of the case Charlie Gard shook consciences throughout the world. His witness and that of his parents goes into the hands of others. And the battle for life continues.