‘One of a kind’

by Luca Catalano Gonzaga

Photography can break silence. Even the one that keeps children prisoners of rare diseases, or genetic, environmental, or infectious ones that most often do not have cures, nor drugs, nor attention, nor laws. In the world, about between 7,000 and 8,000 rare diseases are known, but the figures are rising with the advancement of science and, in particular, with the progress of research. According to data provided by the Italian Higher Institute for Health, rare Italian patients are about 2 million, of which 70 percent are in paediatric age, 20 every 10 thousand inhabitants are now estimated and every year there are 19 thousand new cases reported by the 200 medical structures spread across the peninsula. Although these numbers cannot be ignored , there are still many, far too many clinical cases lacking a diagnosis because of their rarity. Civil society however supports medicine and does not give up : a community of people who want to defeat generalized indifference: parents struggling for the survival of their children, sometimes without drugs, doctors together with researchers, who throw themselves whole-heartedly into “non-remunerative” studies to find concrete solutions, and volunteers, active with support associations to improve the daily lives of those who are ill. And then there are the children affected by these unusual diseases, small heroes of the modern world, who must live with their symptoms all the time, but above all, fight against social exclusion or in the most extreme cases for mere survival. Out of all this the project of photographer Luca Catalano Gonzaga was born, entitled ‘One of a kind’ . It wants to tell the drama of this universe but also the pride and the quest for life through the complex stories of individuals, families and support organizations, with the goal of defeating patient isolation and allowing them to share their experiences, to positively network and ultimately to emerge from invisibility (text by Sebastiano Caputo).

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