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STATEMENT of EMMANUELE DI LEO, PRESIDENT of STEADFAST ONLUS Rome, 29 April 2019 - Senate Chamber of the Republic of Italy

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STATEMENT of EMMANUELE DI LEO, PRESIDENT of STEADFAST ONLUS Rome, 29 April 2019 - Senate Chamber of the Republic of Italy STATEMENT OF EMMANUELE DI LEO, PRESIDENT OF STEADFAST ONLUS Rome, 29 April 2019 - Senate ChamBer of the RepuBlic of Italy Hello everyone. Our organisation, Steadfast Onlus, stood aside the Evans family during the most difficult period of their life. Through a dedicated project, LifeAID, we aim to loBBy in defence of the intrinsic value of every life. I briefly introduce you on how our journey became interconnected with that of Alfie. Alfie was hospitalised in December 2016 and was put on life support through mechanical ventilation. After few days, the hospital proposed the removal of the vital supports. The child was not diagnosed But, according to the doctors, his condition was so severe that he would have not been able to survive and that he would have died in a very short time. At first, the parents agreed. They would have never doubted that the doctors could be wrong. But Alfie immediately showed what he was made of. He was aBle to Breath on his own. After a while, Alfie had good and other more difficult moments in which he was helped with the ventilator. In June 2017 it seemed clear that he could no longer be left without the mechanical aid, so the doctors proposed the withdrawal again. Tom and Kate captured signs of life in Alfie... sometimes he was able to open his eyes, to smiled, to hold his hand and to suck his dummy and then to swallow. The parents then oBjected the opinion of the doctors and decided to make their story puBlic. It was the same period of time in which the story of Charlie Gard, another child who was talked aBout so much and so much we did with Steadfast Onlus, ended tragically. It was aBout to happen again. England didn’t learn any lessons from the Battle that just ended. It seemed impossible but it was even going for the worse. We were at the Beginning stage of our project LifeAID, we were still structuring ourselves, But it was clear what would have Been our “modus operandi”: - to estaBlish a direct contact and relationship with the family, - to guarantee maximum discretion and respect, - to always explain the pros and cons, - to leave the family the free of choice. We would have left to others the clamour and visiBility. We didn't really care. What mattered to us was the result: saving Alfie. That's why only very few knew who we were and what we were doing for the Evans. We had huge operational proBlems. Many wanted to help, But without a serious coordination they were derailing. Tom and Kate were flooded with messages from thousands of people a day. It was difficult for them to understand who to trust because someone boasted knowledge and promised the moon. We made some proposals that unfortunately, the initial legal teams, underestimated. I say unfortunately because they could have proBaBly been decisive without even arriving to court. When Tom went to court alone, we realised that helping them was not enough, they needed to Be taken By their hands. Unfortunately, the first sentence was issued: Alfie was sentenced to death. The legal mechanisms were now very clear to us. The Court of Appeal and the Supreme Court would have never changed the sentence. There is a sort of code of honour among judges, so it cannot Be said that there was an error of assessment by the first judge. The ECHR, as always, rejected the appeal request. We also saw this with Isaiah Haastrup a few months earlier when we were dealing with his case. We slowly Began to make Thomas understand that, while he was in the newspapers, with the appeals to the Pope, we would have acted on the Italian diplomatic front to get the involvement of the highest institutional levels. We would have ensured, at a later stage, that the link Between the two parties was created and solid. We had to act quickly without paying attention to those who felt offended or Bypassed. I repeat this once again: our aim was to save Alfie. We opened the diplomatic channel on several fronts: - The Italian ChamBer of Deputies and the Senate through the support of politicians that shared our same values and that adhered to our initial appeal. In particular, I would like to thank Simone Pillon MP, Matteo Salvini (Deputy Prime Minister and Interior Minister) and Giorgia Meloni MP, who joined first and helped us to make the story of Alfie known that was initially ignored By our media. - The Liverpool Consulate and the London Embassy with whom we worked very closely. - the “Farnesina” (Italian Foreign Ministry) which immediately showed its willingness to evaluate the case and was updated almost daily. We tried the way of the humanitarian Visa. We knew it was difficult to get it Because we needed to oBtain a Bilateral agreement to avoid triggering a diplomatic incident. But the English institution did not even intend to listen. We then started thinking aBout citizenship. We evaluated some possiBle legal scenarios though the help of an Italian association of magistrates, which are our close friend (The Centro Studi Rosario Livatino) and decided to join the English legal team. It was clear that this was the only possibility to allow for the case to remain alive. The Pope's intervention, strong and decisive, helped our work in pressing on the Government. The BamBino Gesù Pediatric Hospital reconfirmed the maximum available to help. We Began to also involve some MEPs up to the President of the European Parliament Antonio Tajani. The morning in which the withdrawn was expected, Alfie, after a long time, opened his eyes again. In a video, that we will never forget, Tom showed to the world his son blinking and sucking his dummy. Mariella Enoc, President of BamBino Gesù, flew to Liverpool, But the English hospital ignored her. Giorgia Meloni MP, who we constantly kept informed, made a puBlic appeal to the Government. Thomas, at the same time, asked Italy to save Alfie. He repeated the phrase: Alfie Belongs to Italy. We called Giorgia and asked her for a final effort, the definitive one. Within 15 minutes she confirmed it was done: the Ministers Alfano and Minniti granted the citizenship. Unfortunately, we all know how it ended, even despite the countless efforts made afterwards. England demonstrated once again that its self-referenced medical-juridical system did not intend to accept any voice that dared to contradict its vision of "quality of life ". The "Best interest" of a seriously disabled person is to die. They switched off the ventilator and Alfie showed everyone he wanted to live. The doctors were Blatantly wrong. Wounded By an infection and with a lung in poor condition, after months when no one had tried to wean him from the ventilator, deprived of hydration for 6 hours and nutrition for over 24, he was still fighting. He Breathed on his own 5 days Before flying to Heaven. I am here today to rememBer Alfie, his family, and his unprecedented fight. But I'm also here to tell you that he left us a task to continue. Every day we receive reports from families around the world who ask us for help. We see everything to happen. Diagnoses, therapies, home care and palliative care are often denied. Some are denied the possiBility of participating in serious and already regulated experimental trials in other countries and the transfer is forBidden. Families are left alone By the state that denies the necessary economic aid and sometimes even life-saving medicines. No one offers them the option of psychological or religious support. I am here to ask the Government for a serious, strong, determined commitment in favour of life. We show Europe that the euthanasia drift can Be stopped. Every life, even the most vulnerable and fragile, is worth living. The power to decide the life or death of someone cannot Be left to doctors and judges. Steadfast Onlus will always Be available to participate at a constructive discussion table with all the political parties that would like to put the defence of life at the centre of their political agenda. .
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