The story of Alex

by Luca Catalano Gonzaga

Photography can break silence. The incontrovertible proof lies in the story of a nine-year-old boy named Alex Granini  and lives in Valbrona, in the province of Como. I always knew Alex had something different, explains Mom Patrizia. These are the “strange sensations”, those “strange voices” that only mothers feel and that are impossible to explain. They are just there, and that’s it. To get to a clear diagnosis it took three years; we were rebounded from one center to another, every doctor had his truth, often forgetting it was a baby just a few months old and a frightened, lost family. I have gone from the greatest joy that can be the birth of a child, to the most intense pain, its loss, something to which I have been very close to and that I have experienced twice. The illness my child is suffering from is called X-linked Reticulate Pigment Disorder with Systematic Manifestations. This disease in addition to photophobia, thermoregulation deficiency, hypo-swelling, also causes growth retardation, kidney disease, calculosis, urinary infections, respiratory infections and gastrointestinal disorders. Alex presents most of these symptoms. When we started this journey, the cases in the world were only 8, now after many years, thanks to the disclosure, the cases have become 29, Alex is still the only Italian case. I hope, telling our story, to be able to help other children like mine, other mothers and even doctors. I hope I can help those like me, who live a very rare situation, to feel less alone. (text by Patrizia Gentile).