{"id":2042,"date":"2025-04-24T07:19:22","date_gmt":"2025-04-24T07:19:22","guid":{"rendered":"https:\/\/www.witnessimage.it\/?p=2042"},"modified":"2025-07-07T13:13:20","modified_gmt":"2025-07-07T13:13:20","slug":"the-story-of-alex","status":"publish","type":"post","link":"https:\/\/www.witnessimage.it\/en\/stories\/the-story-of-alex\/","title":{"rendered":"The story of Alex"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"2042\" class=\"elementor elementor-2042\">\n\t\t\t\t<div class=\"elementor-element elementor-element-080a223 e-flex e-con-boxed wpr-particle-no wpr-jarallax-no wpr-parallax-no wpr-sticky-section-no wpr-column-slider-no wpr-equal-height-no e-con e-parent\" data-id=\"080a223\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5474ea7 elementor-widget elementor-widget-heading\" data-id=\"5474ea7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">The story of Alex<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1123d54 elementor-widget elementor-widget-text-editor\" data-id=\"1123d54\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"autorestoria\">by Luca Catalano Gonzaga<\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fb1ca18 elementor-widget elementor-widget-n-accordion\" data-id=\"fb1ca18\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;default_state&quot;:&quot;all_collapsed&quot;,&quot;max_items_expended&quot;:&quot;one&quot;,&quot;n_accordion_animation_duration&quot;:{&quot;unit&quot;:&quot;ms&quot;,&quot;size&quot;:400,&quot;sizes&quot;:[]}}\" data-widget_type=\"nested-accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"e-n-accordion\" aria-label=\"Accordion. Open links with Enter or Space, close with Escape, and navigate with Arrow Keys\">\n\t\t\t\t\t\t<details id=\"e-n-accordion-item-2630\" class=\"e-n-accordion-item\" >\n\t\t\t\t<summary class=\"e-n-accordion-item-title\" data-accordion-index=\"1\" tabindex=\"0\" aria-expanded=\"false\" aria-controls=\"e-n-accordion-item-2630\" >\n\t\t\t\t\t<span class='e-n-accordion-item-title-header'><div class=\"e-n-accordion-item-title-text\"> Part of <b>One of a kind (on going)<\/b> <\/div><\/span>\n\t\t\t\t\t\t\t<span class='e-n-accordion-item-title-icon'>\n\t\t\t<span class='e-opened' ><svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-angle-up\" viewBox=\"0 0 320 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M177 159.7l136 136c9.4 9.4 9.4 24.6 0 33.9l-22.6 22.6c-9.4 9.4-24.6 9.4-33.9 0L160 255.9l-96.4 96.4c-9.4 9.4-24.6 9.4-33.9 0L7 329.7c-9.4-9.4-9.4-24.6 0-33.9l136-136c9.4-9.5 24.6-9.5 34-.1z\"><\/path><\/svg><\/span>\n\t\t\t<span class='e-closed'><svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-angle-down\" viewBox=\"0 0 320 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M143 352.3L7 216.3c-9.4-9.4-9.4-24.6 0-33.9l22.6-22.6c9.4-9.4 24.6-9.4 33.9 0l96.4 96.4 96.4-96.4c9.4-9.4 24.6-9.4 33.9 0l22.6 22.6c9.4 9.4 9.4 24.6 0 33.9l-136 136c-9.2 9.4-24.4 9.4-33.8 0z\"><\/path><\/svg><\/span>\n\t\t<\/span>\n\n\t\t\t\t\t\t<\/summary>\n\t\t\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-2630\" class=\"elementor-element elementor-element-96a59db e-con-full e-flex wpr-particle-no wpr-jarallax-no wpr-parallax-no wpr-sticky-section-no wpr-column-slider-no wpr-equal-height-no e-con e-child\" data-id=\"96a59db\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div role=\"region\" aria-labelledby=\"e-n-accordion-item-2630\" class=\"elementor-element elementor-element-f99c9f2 e-grid e-con-boxed wpr-particle-no wpr-jarallax-no wpr-parallax-no wpr-sticky-section-no wpr-column-slider-no wpr-equal-height-no e-con e-child\" data-id=\"f99c9f2\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-e27d656 elementor-position-top elementor-widget elementor-widget-image-box\" data-id=\"e27d656\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-image-box-wrapper\"><figure class=\"elementor-image-box-img\"><a href=\"https:\/\/www.witnessimage.it\/stories\/the-story-of-elly\/\" tabindex=\"-1\"><img fetchpriority=\"high\" decoding=\"async\" width=\"768\" height=\"512\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Elly13-768x512-1.jpg\" class=\"attachment-full size-full wp-image-94\" alt=\"\" srcset=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Elly13-768x512-1.jpg 768w, https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Elly13-768x512-1-300x200.jpg 300w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/a><\/figure><div class=\"elementor-image-box-content\"><h3 class=\"elementor-image-box-title\"><a href=\"https:\/\/www.witnessimage.it\/stories\/the-story-of-elly\/\">Italy - 2019<\/a><\/h3><p class=\"elementor-image-box-description\">The story of Elly (on going)<\/p><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0b881f5 elementor-position-top elementor-widget elementor-widget-image-box\" data-id=\"0b881f5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-image-box-wrapper\"><figure class=\"elementor-image-box-img\"><a href=\"https:\/\/www.witnessimage.it\/stories\/the-story-of-francesco-on-going\/\" tabindex=\"-1\"><img decoding=\"async\" width=\"768\" height=\"512\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Francesco_rare01-768x512-1.jpg\" class=\"attachment-full size-full wp-image-101\" alt=\"\" srcset=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Francesco_rare01-768x512-1.jpg 768w, https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Francesco_rare01-768x512-1-300x200.jpg 300w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/a><\/figure><div class=\"elementor-image-box-content\"><h3 class=\"elementor-image-box-title\"><a href=\"https:\/\/www.witnessimage.it\/stories\/the-story-of-francesco-on-going\/\">Rome, Italy - 2019<\/a><\/h3><p class=\"elementor-image-box-description\">The story of Francesco (on going)<\/p><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a7f2ac8 elementor-position-top elementor-widget elementor-widget-image-box\" data-id=\"a7f2ac8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-image-box-wrapper\"><figure class=\"elementor-image-box-img\"><a href=\"https:\/\/www.witnessimage.it\/stories\/the-story-of-alex\/\" tabindex=\"-1\"><img decoding=\"async\" width=\"768\" height=\"512\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story02-768x512-1.jpg\" class=\"attachment-full size-full wp-image-113\" alt=\"\" srcset=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story02-768x512-1.jpg 768w, https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story02-768x512-1-300x200.jpg 300w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/a><\/figure><div class=\"elementor-image-box-content\"><h3 class=\"elementor-image-box-title\"><a href=\"https:\/\/www.witnessimage.it\/stories\/the-story-of-alex\/\">Valbrona, Italy - 2015\/201lex_story<\/a><\/h3><p class=\"elementor-image-box-description\">The story of Alex<\/p><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/details>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2b84d1a elementor-widget elementor-widget-text-editor\" data-id=\"2b84d1a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"postbox\"><div class=\"expcont\"><div class=\"postbox\"><div class=\"expcont\"><div class=\"postbox\"><div class=\"expcont\"><div class=\"postbox\"><div class=\"expcont\"><div class=\"postbox\"><div class=\"expcont\"><div class=\"postbox\"><div class=\"expcont\"><div class=\"postbox\"><div class=\"expcont\"><p>Photography can break silence. The incontrovertible proof lies in the story of a nine-year-old boy named\u00a0<strong>Alex Granini<\/strong>\u00a0 and lives in Valbrona, in the province of Como. I always knew Alex had something different, explains Mom Patrizia. These are the \u201cstrange sensations\u201d, those \u201cstrange voices\u201d that only mothers feel and that are impossible to explain. They are just there, and that\u2019s 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\u00a0<strong>X-linked Reticulate Pigment Disorder with Systematic Manifestations<\/strong>. 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\u00a0<strong>Patrizia Gentile<\/strong>).<\/p><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-093cb5f e-flex e-con-boxed wpr-particle-no wpr-jarallax-no wpr-parallax-no wpr-sticky-section-no wpr-column-slider-no wpr-equal-height-no e-con e-parent\" data-id=\"093cb5f\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-23675cc elementor-arrows-position-outside elementor-widget elementor-widget-image-carousel\" data-id=\"23675cc\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;slides_to_show&quot;:&quot;1&quot;,&quot;navigation&quot;:&quot;arrows&quot;,&quot;infinite&quot;:&quot;yes&quot;,&quot;effect&quot;:&quot;slide&quot;,&quot;speed&quot;:500}\" data-widget_type=\"image-carousel.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-image-carousel-wrapper swiper\" role=\"region\" aria-roledescription=\"carousel\" aria-label=\"Carosello d&#039;immagini\" dir=\"ltr\">\n\t\t\t<div class=\"elementor-image-carousel swiper-wrapper swiper-image-stretch\" aria-live=\"polite\">\n\t\t\t\t\t\t\t\t<div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"1 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story01.jpg\" alt=\"Valbrona, province of Como, Italy. Alex in a playground near Valbrona.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex in a playground near Valbrona.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"2 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story02.jpg\" alt=\"Trieste, Italy. Alex in his hotel room in Trieste, where he undergoes checkups at the city hospital every 6 months.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. Alex in his hotel room in Trieste, where he undergoes checkups at the city hospital every 6 months.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"3 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story03.jpg\" alt=\"Valbrona, province of Como, Italy Patrizia, Alex&#039;s mother, is always ready to protect her son from direct sunlight.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy Patrizia, Alex's mother, is always ready to protect her son from direct sunlight.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"4 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story04.jpg\" alt=\"Valbrona, province of Como, Italy. Giulia takes a stroll in the surroundings of the lake Como.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Giulia takes a stroll in the surroundings of the lake Como.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"5 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story05.jpg\" alt=\"View of Valbrona, in the province of Como, Italy.\" \/><figcaption class=\"elementor-image-carousel-caption\">View of Valbrona, in the province of Como, Italy.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"6 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_4580.jpg\" alt=\"Pusiano Lake, Province of Como, Italy. Alex walking along lake Pusiano.\" \/><figcaption class=\"elementor-image-carousel-caption\">Pusiano Lake, Province of Como, Italy. Alex walking along lake Pusiano.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"7 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story06.jpg\" alt=\"Trieste, Italy. After the medical tests are completed, Alex and his family are ready to go to a restaurant outside Trieste.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. After the medical tests are completed, Alex and his family are ready to go to a restaurant outside Trieste. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"8 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story07.jpg\" alt=\"Valbrona, province of Como, Italy. Alex plays with his father in a playground.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex plays with his father in a playground.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"9 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story08.jpg\" alt=\"Valbrona, province of Como, Italy. Alex and his sister Giulia in a playground.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex and his sister Giulia in a playground.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"10 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story09.jpg\" alt=\"Valbrona, province of Como, Italy. Alex together with his mother Patrizia and his sister Giulia leaving a church near the lake Como.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex together with his mother Patrizia and his sister Giulia leaving a church near the lake Como.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"11 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story10.jpg\" alt=\"Valbrona, province of Como, Italy. It&#039;s 6 a.m., Alex has just woken up and as his routine he curls up on the couch for about 10 minutes, to let the eyes gradually adjust to the light.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. It's 6 a.m., Alex has just woken up and as his routine he curls up on the couch for about 10 minutes, to let the eyes gradually adjust to the light.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"12 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story11.jpg\" alt=\"Valbrona, province of Como, Italy. Patrizia takes Alex&#039;s temperature.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Patrizia takes Alex's temperature.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"13 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story12.jpg\" alt=\"Valbrona, province of Como, Italy. To minimize the discomfort to the eyes, Alex has to put special eye drops at least 10 times a day.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. To minimize the discomfort to the eyes, Alex has to put special eye drops at least 10 times a day.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"14 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story13.jpg\" alt=\"Valbrona, province of Como, Italy. Portrait of Enea and Giotto the dog.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Portrait of Enea and Giotto the dog.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"15 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story14.jpg\" alt=\"Valbrona, province of Como, Italy. A moment of tenderness between Alex and his mom Patrizia.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. A moment of tenderness between Alex and his mom Patrizia.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"16 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_3863.jpg\" alt=\"Valbrona, Province of Como, Italy. Patrizia, the mother, trains Alex\u2019s eyes back to center. This exercise is repeated several times a day.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, Province of Como, Italy. Patrizia, the mother, trains Alex\u2019s eyes back to center. This exercise is repeated several times a day.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"17 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story15.jpg\" alt=\"Valbrona, province of Como, Italy. Cuddle moments before bedtime.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Cuddle moments before bedtime.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"18 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story16.jpg\" alt=\"Valbrona, province of Como, Italy. Alex and his mother just before going to bed.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex and his mother just before going to bed.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"19 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story17.jpg\" alt=\"Valbrona, province of Como, Italy. &quot;Giulia, make the dog get off the sofa!&quot;\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. \"Giulia, make the dog get off the sofa!\"<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"20 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_3877.jpg\" alt=\"Valbrona, Province of Como, Italy. Alex\u2019s room.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, Province of Como, Italy. Alex\u2019s room.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"21 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story18.jpg\" alt=\"Valbrona, province of Como, Italy. Alex among his toys.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex among his toys.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"22 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story19.jpg\" alt=\"Valbrona, province of Como, Italy. Saying &#039;Goodnight!&#039; to Mum and Dad.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Saying 'Goodnight!' to Mum and Dad.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"23 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_4050.jpg\" alt=\"LCG_4050\" \/><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"24 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_4125.jpg\" alt=\"Valbrona, Province of Como, Italy. Patrizia, heavy with fatigue at the end of the day.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, Province of Como, Italy. Patrizia, heavy with fatigue at the end of the day.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"25 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_4194.jpg\" alt=\"Valbrona, Province of Como, Italy. Alex\u2019s special stuffed toys : Spiderman, Cookie Monster, Captain Nickers, Mega Man, Stormtrooper, Minecraft Skeleton.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, Province of Como, Italy. Alex\u2019s special stuffed toys : Spiderman, Cookie Monster, Captain Nickers, Mega Man, Stormtrooper, Minecraft Skeleton.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"26 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story20.jpg\" alt=\"Valbrona, province of Como, Italy. 07.00 a.m.: Alex, still half-asleep, has his breakfast.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. 07.00 a.m.: Alex, still half-asleep, has his breakfast.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"27 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story21.jpg\" alt=\"Valbrona, province of Como, Italy. Alex protects his eyes from the sun while going to the supermarket with his father and his sister.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex protects his eyes from the sun while going to the supermarket with his father and his sister.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"28 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story22.jpg\" alt=\"Valbrona, province of Como, Italy. Alex needs frequent breaks to restore body temperature after excessive sun exposure or undue physical efforts. As a consequence, the temperature decreases quickly, Alex turns pale and has tremors all over the body: at this point he necessarily must eat something to recover. Here he is recovering in a bar on the Lake Como.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex needs frequent breaks to restore body temperature after excessive sun exposure or undue physical efforts. As a consequence, the temperature decreases quickly, Alex turns pale and has tremors all over the body: at this point he necessarily must eat something to recover. Here he is recovering in a bar on the Lake Como. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"29 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/myfriend_Alex02.jpg\" alt=\"Valbrona, province of Como, Italy Though wearing special sunglasses, Alex always travels by car with tinted windows.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy Though wearing special sunglasses, Alex always travels by car with tinted windows. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"30 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story23.jpg\" alt=\"Trieste, Italy. On the city&#039;s waterfront, not far from Piazza Unit\u00e0, Alex&#039;s family spends the afternoon, waiting to go to the Children&#039;s Hospital Burlo Garofolo.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. On the city's waterfront, not far from Piazza Unit\u00e0, Alex's family spends the afternoon, waiting to go to the Children's Hospital Burlo Garofolo. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"31 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story24.jpg\" alt=\"Trieste, Italy. Alex walks along the city seafront next to his mother Patrizia, holding his stuffed animal.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. Alex walks along the city seafront next to his mother Patrizia, holding his stuffed animal. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"32 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_7986.jpg\" alt=\"Valbrona, province of Como, Italy. Portrait of Giulia, Alex\u2019s sister.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Portrait of Giulia, Alex\u2019s sister.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"33 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story25.jpg\" alt=\"Valbrona, province of Como, Italy. A portrait of Alex. The spots on the skin are called &quot;Reticulate Pigmentary Disorder&quot;. At the moment, the spots are stable but they are changing in color; for this reason Alex is going to see an oncologist in January 2016.\" \/><figcaption class=\"elementor-image-carousel-caption\"> Valbrona, province of Como, Italy. A portrait of Alex. The spots on the skin are called \"Reticulate Pigmentary Disorder\". At the moment, the spots are stable but they are changing in color; for this reason Alex is going to see an oncologist in January 2016. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"34 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story26.jpg\" alt=\"Burlo Garofolo hospital, Trieste. Alex at the end of the medical examination. Due to the multisystemic syndrome which affects various body organs, every six months Alex needs to be examined by several specialists and undergo many checkups: general, dermatological, ophthalmic, stomatological, oncological, gastroenterological.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo hospital, Trieste. Alex at the end of the medical examination. Due to the multisystemic syndrome which affects various body organs, every six months Alex needs to be examined by several specialists and undergo many checkups: general, dermatological, ophthalmic, stomatological, oncological, gastroenterological.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"35 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story27.jpg\" alt=\"Milan, Italy. Dr. Andrew Zinn, a geneticist from Dallas, Texas, illustrates other recognised cases in the world - to date only 9 - during a convention held in Milan in 2014, organized by XLPDR International Association ONLUS founded by Patrizia, Alex&#039;s mother.\" \/><figcaption class=\"elementor-image-carousel-caption\">Milan, Italy. Dr. Andrew Zinn, a geneticist from Dallas, Texas, illustrates other recognised cases in the world - to date only 9 - during a convention held in Milan in 2014, organized by XLPDR International Association ONLUS founded by Patrizia, Alex's mother.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"36 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story28.jpg\" alt=\"Burlo Garofolo Hospital, Trieste. Alex is taken to the operating room.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo Hospital, Trieste. Alex is taken to the operating room.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"37 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story29.jpg\" alt=\"Burlo Garofolo Hospital, Trieste. Alex with his mother while he waits to be taken to the operating room.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo Hospital, Trieste. Alex with his mother while he waits to be taken to the operating room.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"38 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story30.jpg\" alt=\"Trieste, Italy. Alex, now at the Burlo Garofolo Hospital, is arranged on the stretcher by nurses and is about to enter the operating room. His face is consumed by the many operations, but his father is there to give him comfort.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. Alex, now at the Burlo Garofolo Hospital, is arranged on the stretcher by nurses and is about to enter the operating room. His face is consumed by the many operations, but his father is there to give him comfort. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"39 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story31.jpg\" alt=\"Trieste, Italy. Alex is ready for surgery along with his faithful friend: Spider Man.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. Alex is ready for surgery along with his faithful friend: Spider Man. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"40 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story32.jpg\" alt=\"Burlo Garofolo Hospital, Trieste. Alex in the operating room during the preparation before general anesthesia with cardiac monitoring.  Alex shortly before being taken to the operating room where he will undergo skin biopsy, surgery for corneal ulcer in left eye and oral rehabilitation: lack of salivation causes dental caries, damages the enamel, and makes the mouth more vulnerable to infections, apart from difficulties in swallowing.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo Hospital, Trieste. Alex in the operating room during the preparation before general anesthesia with cardiac monitoring.  Alex shortly before being taken to the operating room where he will undergo skin biopsy, surgery for corneal ulcer in left eye and oral rehabilitation: lack of salivation causes dental caries, damages the enamel, and makes the mouth more vulnerable to infections, apart from difficulties in swallowing. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"41 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story33.jpg\" alt=\"Burlo Garofolo Hospital, Trieste. Patrizia protects Alex&#039;s eyes from the operating room lights.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo Hospital, Trieste. Patrizia protects Alex's eyes from the operating room lights.\t   <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"42 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story34.jpg\" alt=\"Burlo Garofolo Hospital, Trieste. Alex&#039;s mum Patrizia embraces Lorena, the nurse who has known Alex since he was 3 years old. Alex has been followed-up regularly for more than 5 years for the monitoring of the XLPDR syndrome. Since his birth he has been hospitalized 58 times.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo Hospital, Trieste. Alex's mum Patrizia embraces Lorena, the nurse who has known Alex since he was 3 years old. Alex has been followed-up regularly for more than 5 years for the monitoring of the XLPDR syndrome. Since his birth he has been hospitalized 58 times.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"43 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story35.jpg\" alt=\"Trieste, Italy. Patrizia, the mother, holds Alex&#039;s hands as he has just awakened from the general anaesthesia.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. Patrizia, the mother, holds Alex's hands as he has just awakened from the general anaesthesia. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"44 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story36.jpg\" alt=\"Trieste, Italy. Dad Enea, following the recommendation of Patrizia, the mom, places a blanket on the window to prevent light from entering in Alex&#039;s room who hides, to cover.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. Dad Enea, following the recommendation of Patrizia, the mom, places a blanket on the window to prevent light from entering in Alex's room who hides, to cover. \t<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"45 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story37.jpg\" alt=\"Burlo Garofolo Hospital, Trieste. Alex shortly before being taken to the operating room where he will undergo skin biopsy, surgery for corneal ulcer in left eye and oral rehabilitation: lack of salivation causes dental caries, damages the enamel, and makes the mouth more vulnerable to infections, apart from difficulties in swallowing.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo Hospital, Trieste. Alex shortly before being taken to the operating room where he will undergo skin biopsy, surgery for corneal ulcer in left eye and oral rehabilitation: lack of salivation causes dental caries, damages the enamel, and makes the mouth more vulnerable to infections, apart from difficulties in swallowing.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"46 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story38.jpg\" alt=\"Burlo Garofolo Hospital, Trieste. Alex is waiting for being hospitalized.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo Hospital, Trieste. Alex is waiting for being hospitalized.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"47 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story39.jpg\" alt=\"Burlo Garofolo hospital, Trieste.Alex during the Schirmer test, used to measure the lacrimation of the eye. It is not an invasive examination, but in Alex&#039;s case, given his pathology, it is very painful for him.The outcome of this test has confirmed the absence of tearing.\u00a0\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo hospital, Trieste.Alex during the Schirmer test, used to measure the lacrimation of the eye. It is not an invasive examination, but in Alex's case, given his pathology, it is very painful for him.The outcome of this test has confirmed the absence of tearing.\u00a0<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"48 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story40.jpg\" alt=\"Burlo Garofolo Hospital, Trieste.Within the elevator with mum and dad, carrying Alex&#039;s medical record.\" \/><figcaption class=\"elementor-image-carousel-caption\">Burlo Garofolo Hospital, Trieste.Within the elevator with mum and dad, carrying Alex's medical record. <\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"49 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story41.jpg\" alt=\"Trieste, Italy. The whole family at Burlo Garofolo Hospital in Trieste. Every 6 months Alex undergoes several medical examinations.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. The whole family at Burlo Garofolo Hospital in Trieste. Every 6 months Alex undergoes several medical examinations.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"50 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story42.jpg\" alt=\"Valbrona, province of Como, Italy. Giulia takes the dog for a walk.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Giulia takes the dog for a walk.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"51 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_3405.jpg\" alt=\"Valbrona, Province of Como, Italy. Alex going back home with his dog Giotto. Taking the dog down to the yard, walking up and down the stairs, are exercises for the development of his autonomy.\u00a0\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, Province of Como, Italy. Alex going back home with his dog Giotto. Taking the dog down to the yard, walking up and down the stairs, are exercises for the development of his autonomy.\u00a0<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"52 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story43.jpg\" alt=\"Valbrona, province of Como, Italy. In the mountains nearby Valbrona.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. In the mountains nearby Valbrona.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"53 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story44.jpg\" alt=\"Valbrona, province of Como, Italy. Giulia strolls in the snow. Alex would love to be out there with his sister, but the glare from the snow would be too harmful for his eyes.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Giulia strolls in the snow. Alex would love to be out there with his sister, but the glare from the snow would be too harmful for his eyes.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"54 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story45.jpg\" alt=\"Valbrona, province of Como, Italy. Giulia under the snow.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Giulia under the snow.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"55 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_7472.jpg\" alt=\"Valbrona, province of Como, Italy. The cold weather, the snow are a special moment for Alex, as he doesn&#039;t risk as he does in the heat. The contact with snow acts immediately with his body, bringing its temperature to the correct standard.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. The cold weather, the snow are a special moment for Alex, as he doesn't risk as he does in the heat. The contact with snow acts immediately with his body, bringing its temperature to the correct standard.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"56 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_7736.jpg\" alt=\"Valbrona, province of Como, Italy. Alex in full freedom of movement, still maintaining some fundamental protections : hat, gloves and glasses with a special protection inside them, preventing air and light to reach his eyes.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex in full freedom of movement, still maintaining some fundamental protections : hat, gloves and glasses with a special protection inside them, preventing air and light to reach his eyes.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"57 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_6982.jpg\" alt=\"Valbrona, Province of Como, Italy Alex takes karate classes with his father, as suggested by his doctors, but before commencing he must prepare his body so that he doesn\u2019t overheat.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, Province of Como, Italy Alex takes karate classes with his father, as suggested by his doctors, but before commencing he must prepare his body so that he doesn\u2019t overheat.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"58 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story46.jpg\" alt=\"Valbrona, province of Como, Italy. Alex simulates a fight with a girl of the same age. On doctors&#039; recommendation, his parents considered important to enrol Alex for judo lessons so that he could socialize with other children of the same age and did not feel isolated and different.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex simulates a fight with a girl of the same age. On doctors' recommendation, his parents considered important to enrol Alex for judo lessons so that he could socialize with other children of the same age and did not feel isolated and different.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"59 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_7238.jpg\" alt=\"Valbrona, province of Como, Italy. The critical moment has passed and Alex takes care to slowly re-hydrate his body.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. The critical moment has passed and Alex takes care to slowly re-hydrate his body.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"60 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story47.jpg\" alt=\"Valbrona, province of Como, Italy. Alex is refreshed with thermal water, to prevent and control the body overheating, which then determines hyperthermia, a temperature increase that can even reach 39 degrees Celsius within a few minutes, which can cause a confusional state and a cardiac arrest, such are some of the consequences.\u00a0\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex is refreshed with thermal water, to prevent and control the body overheating, which then determines hyperthermia, a temperature increase that can even reach 39 degrees Celsius within a few minutes, which can cause a confusional state and a cardiac arrest, such are some of the consequences.\u00a0<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"61 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story48.jpg\" alt=\"Valbrona, province of Como, Italy. Helped by his father Enea, Alex wears his kimono before going to judo lessons.\tHis parents take him to the gym in order to support his integration with other children and to prevent any form of isolation.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Helped by his father Enea, Alex wears his kimono before going to judo lessons.\tHis parents take him to the gym in order to support his integration with other children and to prevent any form of isolation.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"62 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story49.jpg\" alt=\"Valbrona, province of Como, Italy. A moment of rest for Alex after playing at the playground.,Alex can&#039;t run or play for more than 10-15 minutes. He often has to stop in order to keep the body temperature constant.,An increase in body temperature causes strong headaches, skin reddening and a complete confused state.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. A moment of rest for Alex after playing at the playground.,Alex can't run or play for more than 10-15 minutes. He often has to stop in order to keep the body temperature constant.,An increase in body temperature causes strong headaches, skin reddening and a complete confused state.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"63 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story50.jpg\" alt=\"Trieste (Italy). After surgery and 2 days of hospitalization at Burlo Garofolo Hospital, Alex and his parents go to the cinema to see &quot;Kung Fu Panda 3&quot;.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste (Italy). After surgery and 2 days of hospitalization at Burlo Garofolo Hospital, Alex and his parents go to the cinema to see \"Kung Fu Panda 3\".<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"64 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story51.jpg\" alt=\"Valbrona, province of Como, Italy. Alex plays hide-and-seek with his sister Giulia in a supermarket.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, province of Como, Italy. Alex plays hide-and-seek with his sister Giulia in a supermarket.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"65 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story52.jpg\" alt=\"Rimini, Italy. Protected by sunglasses and cap Alex plays smiling in the water late in the afternoon when the rays are weak unlike the morning where the environment is much more hostile.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. Protected by sunglasses and cap Alex plays smiling in the water late in the afternoon when the rays are weak unlike the morning where the environment is much more hostile.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"66 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story53.jpg\" alt=\"Rimini, Italy. Alex&#039;s entire family dives into the water with the little one.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. Alex's entire family dives into the water with the little one.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"67 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story54.jpg\" alt=\"Rimini, Italy. Alex looks upward in late afternoon hours as the sun is setting and emitting weaker light rays that allow the little one not to be blinded.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. Alex looks upward in late afternoon hours as the sun is setting and emitting weaker light rays that allow the little one not to be blinded.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"68 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story55.jpg\" alt=\"Rimini, Italy. The afternoon hours of the beach, less chaotic and loud, allow Alex to concentrate on Patrizia\u2019s voice that accompanies him in his amusements.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. The afternoon hours of the beach, less chaotic and loud, allow Alex to concentrate on Patrizia\u2019s voice that accompanies him in his amusements.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"69 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story56.jpg\" alt=\"Rimini, Italy. Alex&#039;s spots on the skin are one of the main features of the syndrome and are related to the cross-linked disorder.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. Alex's spots on the skin are one of the main features of the syndrome and are related to the cross-linked disorder.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"70 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story57.jpg\" alt=\"Rimini, Italy. Alex immerses himself in fresh water, helped by hisMother Patrizia, to remove the sea salt from his body.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. Alex immerses himself in fresh water, helped by hisMother Patrizia, to remove the sea salt from his body.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"71 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story58.jpg\" alt=\"Rimini, Italy. Patrizia takes care of her little Alex spraying on hair a refreshing jet of water on his hair. It takes just a few minutes to overheat his small body.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. Patrizia takes care of her little Alex spraying on hair a refreshing jet of water on his hair. It takes just a few minutes to overheat his small body.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"72 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story59.jpg\" alt=\"Rimini, Italy. In the evening, when the sun is down, the environment is less hostile to Alex who can play outdoors.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. In the evening, when the sun is down, the environment is less hostile to Alex who can play outdoors.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"73 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story60.jpg\" alt=\"Rimini, Italy. At the outbreak of fireworks, for unconditional reflection, Alex shakes his eyes in front of the light beam that lights up the night.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. At the outbreak of fireworks, for unconditional reflection, Alex shakes his eyes in front of the light beam that lights up the night.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"74 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story61.jpg\" alt=\"Rimini, Italy. The beach lights up with the fireworks where Alex&#039;s family decided to spend the holiday.\" \/><figcaption class=\"elementor-image-carousel-caption\">Rimini, Italy. The beach lights up with the fireworks where Alex's family decided to spend the holiday.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"75 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/Alex_story62.jpg\" alt=\"Trieste, Italy. Alex in a moment of play in Trieste.The night is the best time to go out and have fun: the sun has set and there are no jumps in temperature.\" \/><figcaption class=\"elementor-image-carousel-caption\">Trieste, Italy. Alex in a moment of play in Trieste.The night is the best time to go out and have fun: the sun has set and there are no jumps in temperature.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"76 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_4924-2.jpg\" alt=\"Valbrona, Province of Como, Italy. Alex wearing his favourite mask, Jason Voorhees\u2019s, an imaginary character protagonist of the twelve episodes from the saga Friday 13th.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, Province of Como, Italy. Alex wearing his favourite mask, Jason Voorhees\u2019s, an imaginary character protagonist of the twelve episodes from the saga Friday 13th.<\/figcaption><\/figure><\/div><div class=\"swiper-slide\" role=\"group\" aria-roledescription=\"slide\" aria-label=\"77 di 77\"><figure class=\"swiper-slide-inner\"><img decoding=\"async\" class=\"swiper-slide-image\" src=\"https:\/\/www.witnessimage.it\/wp-content\/uploads\/2025\/04\/LCG_4948.jpg\" alt=\"Valbrona, Province of Como, Italy. Alex going for a walk in the woods with his best friend Simone. They are looking for chestnuts.\" \/><figcaption class=\"elementor-image-carousel-caption\">Valbrona, Province of Como, Italy. Alex going for a walk in the woods with his best friend Simone. They are looking for chestnuts.<\/figcaption><\/figure><\/div>\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-swiper-button elementor-swiper-button-prev\" role=\"button\" tabindex=\"0\">\n\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-eicon-chevron-left\" viewBox=\"0 0 1000 1000\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M646 125C629 125 613 133 604 142L308 442C296 454 292 471 292 487 292 504 296 521 308 533L604 854C617 867 629 875 646 875 663 875 679 871 692 858 704 846 713 829 713 812 713 796 708 779 692 767L438 487 692 225C700 217 708 204 708 187 708 171 704 154 692 142 675 129 663 125 646 125Z\"><\/path><\/svg>\t\t\t\t\t<\/div>\n\t\t\t\t\t<div class=\"elementor-swiper-button elementor-swiper-button-next\" role=\"button\" tabindex=\"0\">\n\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-eicon-chevron-right\" viewBox=\"0 0 1000 1000\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M696 533C708 521 713 504 713 487 713 471 708 454 696 446L400 146C388 133 375 125 354 125 338 125 325 129 313 142 300 154 292 171 292 187 292 204 296 221 308 233L563 492 304 771C292 783 288 800 288 817 288 833 296 850 308 863 321 871 338 875 354 875 371 875 388 867 400 854L696 533Z\"><\/path><\/svg>\t\t\t\t\t<\/div>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-ba57fe6 e-flex e-con-boxed wpr-particle-no wpr-jarallax-no wpr-parallax-no wpr-sticky-section-no wpr-column-slider-no wpr-equal-height-no e-con e-parent\" data-id=\"ba57fe6\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-8c7f5a1 elementor-widget elementor-widget-heading\" data-id=\"8c7f5a1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 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Italian magazine<\/a><\/h2><\/div><div class=\"wpr-slider-btns\"><\/div><\/div><\/div><\/div><\/div><\/div><div class=\"wpr-slider-item elementor-repeater-item-a58db84\"><div class=\"wpr-slider-item-bg \" style=\"background-image: url()\"><\/div><div class=\"wpr-cv-container\"><div class=\"wpr-cv-outer\"><div class=\"wpr-cv-inner\"><div class=\"wpr-slider-content\"><div class=\"wpr-slider-title\"><h2><a href=\"https:\/\/www.witnessimage.it\/news\/luca-catalano-gonzaga-winner-nppas-quarterly-picture-editing-contest-usa\/\" target=\"_blank\">Luca Catalano Gonzaga winner NPPA\u2019s Quarterly Picture Editing Contest USA<\/a><\/h2><\/div><div class=\"wpr-slider-btns\"><\/div><\/div><\/div><\/div><\/div><\/div><div class=\"wpr-slider-item elementor-repeater-item-60b1454\"><div class=\"wpr-slider-item-bg \" style=\"background-image: url()\"><\/div><div class=\"wpr-cv-container\"><div class=\"wpr-cv-outer\"><div class=\"wpr-cv-inner\"><div class=\"wpr-slider-content\"><div class=\"wpr-slider-title\"><h2><a href=\"https:\/\/www.witnessimage.it\/news\/the-story-of-alex-by-luca-catalano-gonzaga-on-cnn-photo\/\" target=\"_blank\">The \u201cStory of Alex\u201d by Luca Catalano Gonzaga on CNN photo<\/a><\/h2><\/div><div class=\"wpr-slider-btns\"><\/div><\/div><\/div><\/div><\/div><\/div>\t\t\t<\/div>\n\t\t\t<div class=\"wpr-slider-controls\">\n\t\t\t\t<div class=\"wpr-slider-dots\"><\/div>\n\t\t\t<\/div>\n\n\t\t\t<div class=\"wpr-slider-arrow-container\">\n\t\t\t\t<div class=\"wpr-slider-prev-arrow wpr-slider-arrow\" id=\"wpr-slider-prev-3e77ce1\">\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"wpr-slider-next-arrow wpr-slider-arrow\" id=\"wpr-slider-next-3e77ce1\">\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>The story of Alex by Luca Catalano Gonzaga Part of One of a kind (on going) Italy &#8211; 2019 The story of Elly (on going) Rome, Italy &#8211; 2019 The story of Francesco (on going) Valbrona, Italy &#8211; 2015\/201lex_story The story of Alex Italy &#8211; 2019 The story of Elly (on going) Rome, Italy &#8211; 2019 The story of Francesco (on going) Valbrona, Italy &#8211; 2015\/201lex_story The story of Alex Photography can break silence. The incontrovertible proof lies in the story of a nine-year-old boy named\u00a0Alex Granini\u00a0 and lives in Valbrona, in the province of Como. I always knew Alex had something different, explains Mom Patrizia. These are the \u201cstrange sensations\u201d, those \u201cstrange voices\u201d that only mothers feel and that are impossible to explain. They are just there, and that\u2019s 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\u00a0X-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\u00a0Patrizia Gentile). Valbrona, province of Como, Italy. Alex in a playground near Valbrona. Trieste, Italy. Alex in his hotel room in Trieste, where he undergoes checkups at the city hospital every 6 months. Valbrona, province of Como, Italy Patrizia, Alex&#8217;s mother, is always ready to protect her son from direct sunlight. Valbrona, province of Como, Italy. Giulia takes a stroll in the surroundings of the lake Como. View of Valbrona, in the province of Como, Italy. Pusiano Lake, Province of Como, Italy. Alex walking along lake Pusiano. Trieste, Italy. After the medical tests are completed, Alex and his family are ready to go to a restaurant outside Trieste. Valbrona, province of Como, Italy. Alex plays with his father in a playground. Valbrona, province of Como, Italy. Alex and his sister Giulia in a playground. Valbrona, province of Como, Italy. Alex together with his mother Patrizia and his sister Giulia leaving a church near the lake Como. Valbrona, province of Como, Italy. It&#8217;s 6 a.m., Alex has just woken up and as his routine he curls up on the couch for about 10 minutes, to let the eyes gradually adjust to the light. Valbrona, province of Como, Italy. Patrizia takes Alex&#8217;s temperature. Valbrona, province of Como, Italy. To minimize the discomfort to the eyes, Alex has to put special eye drops at least 10 times a day. Valbrona, province of Como, Italy. Portrait of Enea and Giotto the dog. Valbrona, province of Como, Italy. A moment of tenderness between Alex and his mom Patrizia. Valbrona, Province of Como, Italy. Patrizia, the mother, trains Alex\u2019s eyes back to center. This exercise is repeated several times a day. Valbrona, province of Como, Italy. Cuddle moments before bedtime. Valbrona, province of Como, Italy. Alex and his mother just before going to bed. Valbrona, province of Como, Italy. &#8220;Giulia, make the dog get off the sofa!&#8221; Valbrona, Province of Como, Italy. Alex\u2019s room. Valbrona, province of Como, Italy. Alex among his toys. Valbrona, province of Como, Italy. Saying &#8216;Goodnight!&#8217; to Mum and Dad. Valbrona, Province of Como, Italy. Patrizia, heavy with fatigue at the end of the day. Valbrona, Province of Como, Italy. Alex\u2019s special stuffed toys : Spiderman, Cookie Monster, Captain Nickers, Mega Man, Stormtrooper, Minecraft Skeleton. Valbrona, province of Como, Italy. 07.00 a.m.: Alex, still half-asleep, has his breakfast. Valbrona, province of Como, Italy. Alex protects his eyes from the sun while going to the supermarket with his father and his sister. Valbrona, province of Como, Italy. Alex needs frequent breaks to restore body temperature after excessive sun exposure or undue physical efforts. As a consequence, the temperature decreases quickly, Alex turns pale and has tremors all over the body: at this point he necessarily must eat something to recover. Here he is recovering in a bar on the Lake Como. Valbrona, province of Como, Italy Though wearing special sunglasses, Alex always travels by car with tinted windows. Trieste, Italy. On the city&#8217;s waterfront, not far from Piazza Unit\u00e0, Alex&#8217;s family spends the afternoon, waiting to go to the Children&#8217;s Hospital Burlo Garofolo. Trieste, Italy. Alex walks along the city seafront next to his mother Patrizia, holding his stuffed animal. Valbrona, province of Como, Italy. Portrait of Giulia, Alex\u2019s sister. Valbrona, province of Como, Italy. A portrait of Alex. The spots on the skin are called &#8220;Reticulate Pigmentary Disorder&#8221;. At the moment, the spots are stable but they are changing in color; for this reason Alex is going to see an oncologist in January 2016. Burlo Garofolo hospital, Trieste. Alex at the end of the medical examination. Due to the multisystemic syndrome which affects various body organs, every six months Alex needs to be examined by several specialists and undergo many checkups: general, dermatological, ophthalmic, stomatological, oncological, gastroenterological. Milan, Italy. Dr. Andrew Zinn, a geneticist from Dallas, Texas, illustrates other recognised cases in the world &#8211; to date only 9 &#8211; during a convention held in Milan in 2014, organized by XLPDR International Association ONLUS founded by Patrizia, Alex&#8217;s mother. Burlo Garofolo Hospital, Trieste. Alex is taken to the operating<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-2042","post","type-post","status-publish","format-standard","hentry","category-stories"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/posts\/2042","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/comments?post=2042"}],"version-history":[{"count":22,"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/posts\/2042\/revisions"}],"predecessor-version":[{"id":8450,"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/posts\/2042\/revisions\/8450"}],"wp:attachment":[{"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/media?parent=2042"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/categories?post=2042"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.witnessimage.it\/en\/wp-json\/wp\/v2\/tags?post=2042"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}