Vatican City — Love is a miraculous force that helps the parents of sick children focus on the beauty of their children's lives and keeps the flame of hope for a cure alive, Pope Francis told an Italian couple and a group of their supporters.
Members of the group, known as "Una Vita Rara" ("A Rare Life"), had just completed a relay run of more than 430 miles to Rome from Monticelli Brusati in northern Italy to raise awareness about Allan-Herndon-Dudley syndrome.
Davide Boniotti, the son of Rosita and Giorgio Boniotti, was diagnosed with the syndrome 15 years ago, when he was less than one month old.
Pope Francis' meeting April 30 with Davide, his parents and about 60 supporters came just two days after he addressed hundreds of renowned researchers, physicians, health care executives and entertainers attending a three-day conference about new medical technology, the future of medicine and practical steps to promote health and health care treatment around the world.
Pope Francis told the Boniotti family and members of their association that in every meeting he has with families of someone with a rare disease, he sees the pain of their suffering and exhaustion, but even more, he sees "the desire of the families to come together to face this reality and do something."
Choosing "A Rare Life" for the name of the association, the pope said, "expresses Davide's reality, and yours with him, but in a positive way."
"The negative exists, we know," the pope told them. "It's a daily reality."
"But this name means that you know how to look at the positive, which is that every human life is unique and that even if a disease is rare, life is even more so," the pope said.
"This positive gaze is a typical 'miracle' of love," the pope said. "It knows how to see the good even in a negative situation (and) it knows how to safeguard a small flame in the midst of a dark night."
Addressing the international "United to Cure Conference" April 28, Pope Francis had said that as scientists learn more about human life and about disease, it is becoming clearer that individuals must do more to respect the sacredness of every human life and to protect the environment.
"Human health needs to be considered in a broader context, not only in relation to scientific research but also to our ability to preserve and protect the natural environment" and to show concern for each person, "especially those experiencing social and cultural hardships that endanger both their health and their access to adequate care," the pope said.
"While the church applauds every effort in research and application directed to the care of our suffering brothers and sisters, she is also mindful of the basic principle that 'not everything technically possible or doable is thereby ethically acceptable,' " Pope Francis reminded participants at the conference, co-sponsored by the Pontifical Council for Culture.
Citing Blessed Paul VI, the pope insisted that progress, whether in medicine or in economic development, can be measured only by how it helps all people.
Pope Francis did not mention the case of Alfie Evans, the British toddler who had died just a few hours earlier after months of court battles between his parents and the doctors caring for him. But he told participants, "The problem of human suffering challenges us to create new means of interaction between individuals and institutions, breaking down barriers and working together to enhance patient care."
Throughout the conference, physicians and researchers insisted on the importance of disease prevention, particularly through lifestyle choices, especially highlighting the dangers of smoking and obesity, but also looking at the role environmental degradation plays in causing disease.
"Prevention involves taking a farsighted look at human beings and the environment in which we live," the pope said. "It means aiming for a culture of balance, whose essential factors — education, physical activity, diet, the protection of the environment, respect for the 'health codes' practiced by the various religions, timely and precise diagnosis and so many others — can help us to live better, with fewer health risks."
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