{"id":413,"date":"2021-11-27T18:12:18","date_gmt":"2021-11-27T17:12:18","guid":{"rendered":"https:\/\/uneetincellepourisaure.com\/lhistoire-disaure-en\/"},"modified":"2024-01-31T12:28:41","modified_gmt":"2024-01-31T11:28:41","slug":"lhistoire-disaure-en","status":"publish","type":"page","link":"https:\/\/uneetincellepourisaure.com\/en\/lhistoire-disaure-en\/","title":{"rendered":"Isaure&#8217;s story &#8230;"},"content":{"rendered":"<p><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"background-color: #f4d0d0;background-position: center center;background-repeat: no-repeat;border-width: 0px 0px 0px 0px;border-color:#e2e2e2;border-style:solid;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-stretch\" style=\"max-width:1497.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column etincelles\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><style type=\"text\/css\">@media only screen and (max-width:1024px) {.fusion-title.fusion-title-1{margin-top:10px!important; margin-right:0px!important;margin-bottom:15px!important;margin-left:0px!important;}}@media only screen and (max-width:640px) {.fusion-title.fusion-title-1{margin-top:10px!important; margin-right:0px!important;margin-bottom:10px!important; margin-left:0px!important;}}<\/style><div class=\"fusion-title title fusion-title-1 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"margin-top:10px;margin-right:0px;margin-bottom:15px;margin-left:0px;\"><h2 class=\"title-heading-left\" style=\"margin:0;\">Isaure&#8217;s story &#8230;<\/h2><\/div><div class=\"fusion-text fusion-text-1 sous-titre\"><p>Like several thousand parents around the world, Marie and Henri are confronted with their daughter\u2019s orphan disease. Today, rare genetic diseases still suffer from a lack of investment and therefore of research, plunging parents and siblings into a sea of unknowns, facing a lot of unanswered questions, great ambiguity\u2026 which lets us foresee a daily life filled with distress and anxiety.<\/p>\n<\/div><div class=\"fusion-text fusion-text-2\"><p>If Marie and Henri quickly accepted their daughter\u2019s situation, they refuse resignation. What does the future hold for their little girl? For Isaure, for Octave her older brother, for their loved ones and for all the families confronted with the disease, they decided to fight. It is therefore to support and advance scientific research projects and their clinical applications for the treatment of encephalopathy linked to the mutation of the KCNT1 gene that they have created: &#8220;A spark for Isaure &#8230; and genetic research&#8221;.<\/p>\n<\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-0{width:100% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-0 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 1.92%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 1.92%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-0{width:100% !important;order : 0;}.fusion-builder-column-0 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-0{width:100% !important;order : 0;}.fusion-builder-column-0 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-flex-container.fusion-builder-row-1{ padding-top : 60px;margin-top : 0px;padding-right : 0px;padding-bottom : 40px;margin-bottom : 0px;padding-left : 0px;}<\/style><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-2 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"background-color: rgba(255,255,255,0);background-position: center center;background-repeat: no-repeat;border-width: 0px 0px 0px 0px;border-color:#e2e2e2;border-style:solid;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-stretch\" style=\"max-width:1497.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-1 fusion_builder_column_1_2 1_2 fusion-flex-column etincelles\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div class=\"fusion-text fusion-text-3 sous-titre\" style=\"font-size:50px;line-height:1.4;\"><p>Marie and Henri<br \/>\nparents of Isaure<br \/>\ntell us more about their journey<\/p>\n<\/div><style type=\"text\/css\">@media only screen and (max-width:1024px) {.fusion-title.fusion-title-2{margin-top:10px!important; margin-right:0px!important;margin-bottom:15px!important;margin-left:0px!important;}}@media only screen and (max-width:640px) {.fusion-title.fusion-title-2{margin-top:10px!important; margin-right:0px!important;margin-bottom:10px!important; margin-left:0px!important;}}<\/style><div class=\"fusion-title title fusion-title-2 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"margin-top:10px;margin-right:0px;margin-bottom:15px;margin-left:0px;\"><h2 class=\"title-heading-left\" style=\"margin:0;\">March 28, 2020: the birth of Isaure.<\/h2><\/div><div class=\"fusion-text fusion-text-4\"><p>When she was born, Isaure was a lovely little girl and, by all appearances, in excellent health.<\/p>\n<p>We were overwhelmed with joy during our first weeks with Isaure and Octave, far from imagining the tsunami that would hit our family a few weeks later &#8230;<\/p>\n<p>Isaure was developing quite normally and was already giving us her first smiles, for our greatest happiness. We were far from imagining that they would one day disappear&#8230;<\/p>\n<p>After these few weeks in this bubble , our life changed &#8230;<\/p>\n<div id=\"s3gt_translate_tooltip_mini\" class=\"s3gt_translate_tooltip_mini_box\" style=\"background: initial !important; border: initial !important; border-radius: initial !important; border-spacing: initial !important; border-collapse: initial !important; direction: ltr !important; flex-direction: initial !important; font-weight: initial !important; height: initial !important; letter-spacing: initial !important; min-width: initial !important; max-width: initial !important; min-height: initial !important; max-height: initial !important; margin: auto !important; padding: initial !important; text-align: initial !important; width: initial !important; color: inherit !important; font-size: 13px !important; font-family: X-LocaleSpecific, sans-serif, Tahoma, Helvetica !important; line-height: 13px !important; vertical-align: top !important;\">\n<div id=\"s3gt_translate_tooltip_mini_logo\" class=\"s3gt_translate_tooltip_mini\" title=\"Translate the selected text\"><\/div>\n<div id=\"s3gt_translate_tooltip_mini_sound\" class=\"s3gt_translate_tooltip_mini\" title=\"Read\"><\/div>\n<div id=\"s3gt_translate_tooltip_mini_copy\" class=\"s3gt_translate_tooltip_mini\" title=\"Copy text to clipboard\"><\/div>\n<\/div>\n<\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-1{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-1 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-1{width:50% !important;order : 0;}.fusion-builder-column-1 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-1{width:100% !important;order : 0;}.fusion-builder-column-1 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-2 fusion_builder_column_1_2 1_2 fusion-flex-column\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div style=\"text-align:center;\"><span class=\" fusion-imageframe imageframe-none imageframe-1 hover-type-none\"><img decoding=\"async\" width=\"2560\" height=\"1920\" title=\"IMG_E5347\" src=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/IMG_E5347-scaled.jpg\" alt class=\"img-responsive wp-image-331\" srcset=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/IMG_E5347-200x150.jpg 200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/IMG_E5347-400x300.jpg 400w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/IMG_E5347-600x450.jpg 600w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/IMG_E5347-800x600.jpg 800w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/IMG_E5347-1200x900.jpg 1200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/IMG_E5347-scaled.jpg 2560w\" sizes=\"(max-width: 640px) 100vw, 800px\" \/><\/span><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-2{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-2 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-2{width:50% !important;order : 0;}.fusion-builder-column-2 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-2{width:100% !important;order : 0;}.fusion-builder-column-2 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-flex-container.fusion-builder-row-2{ padding-top : 0px;margin-top : 60px;padding-right : 0px;padding-bottom : 0px;margin-bottom : 20px;padding-left : 0px;}<\/style><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-3 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"background-color: rgba(255,255,255,0);background-position: center center;background-repeat: no-repeat;border-width: 0px 0px 0px 0px;border-color:#e2e2e2;border-style:solid;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-stretch\" style=\"max-width:1497.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-3 fusion_builder_column_1_2 1_2 fusion-flex-column\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div style=\"text-align:center;\"><span class=\" fusion-imageframe imageframe-none imageframe-2 hover-type-none\"><img decoding=\"async\" width=\"819\" height=\"673\" title=\"symptomes\" src=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/symptomes.png\" alt class=\"img-responsive wp-image-315\" srcset=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/symptomes-200x164.png 200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/symptomes-400x329.png 400w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/symptomes-600x493.png 600w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/symptomes-800x657.png 800w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/symptomes.png 819w\" sizes=\"(max-width: 640px) 100vw, 800px\" \/><\/span><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-3{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-3 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-3{width:50% !important;order : 0;}.fusion-builder-column-3 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-3{width:100% !important;order : 0;}.fusion-builder-column-3 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-4 fusion_builder_column_1_2 1_2 fusion-flex-column etincelles\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><style type=\"text\/css\">@media only screen and (max-width:1024px) {.fusion-title.fusion-title-3{margin-top:10px!important; margin-right:0px!important;margin-bottom:15px!important;margin-left:0px!important;}}@media only screen and (max-width:640px) {.fusion-title.fusion-title-3{margin-top:10px!important; margin-right:0px!important;margin-bottom:10px!important; margin-left:0px!important;}}<\/style><div class=\"fusion-title title fusion-title-3 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"margin-top:10px;margin-right:0px;margin-bottom:15px;margin-left:0px;\"><h2 class=\"title-heading-left\" style=\"margin:0;\">June 9, 2020: the onset of the first symptoms and hospitalization at the Femme M\u00e8re Enfants (Mother \u2013 Child) hospital in Lyon<\/h2><\/div><div class=\"fusion-text fusion-text-5\"><p>Isaure\u2019s first seizures started when she was 2 months old. We were starting to feel that something was wrong &#8230;<\/p>\n<p>These first movements then these absences which could have seemed harmless, alarmed us.<\/p>\n<p>In just a few days, the crises multiplied, and we took Isaure to the hospital, terrified but confident.<\/p>\n<p>We were far from imagining the ordeal we were heading towards&#8230;<\/p>\n<p>It was the start of more than 3 months of hospitalization and particularly difficult days for Isaure and all of us.<\/p>\n<\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-4{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-4 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-4{width:50% !important;order : 0;}.fusion-builder-column-4 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-4{width:100% !important;order : 0;}.fusion-builder-column-4 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-flex-container.fusion-builder-row-3{ padding-top : 0px;margin-top : 60px;padding-right : 0px;padding-bottom : 0px;margin-bottom : 20px;padding-left : 0px;}<\/style><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-4 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"background-color: rgba(255,255,255,0);background-position: center center;background-repeat: no-repeat;border-width: 0px 0px 0px 0px;border-color:#e2e2e2;border-style:solid;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-stretch\" style=\"max-width:1497.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-5 fusion_builder_column_1_2 1_2 fusion-flex-column etincelles\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div class=\"fusion-text fusion-text-6 sous-titre\" style=\"font-size:26px;line-height:1.4;\"><p>After each medical examination, we held our breath, anxious to know what the doctors were going to tell us.<\/p>\n<p>The first results being normal, we were relieved but yet no molecule could stop Isaure\u2019s seizures and give her any relief.<\/p>\n<\/div><div class=\"fusion-text fusion-text-7\"><p>We were terrified of these attacks, which were increasingly frequent and violent, requiring re-oxygenation and the administration of shock treatments almost every day.<\/p>\n<p>We were powerless in the face of this situation, which left our little girl no respite.<\/p>\n<p>The professionalism and support of all the teams at the hospital were no longer enough and we sometimes felt they were helpless too in the face of Isaure life threatening situation.<\/p>\n<p>Days, weeks and months passed and Isaure&#8217;s general condition deteriorated, her smile was gone, our interactions with her became impossible &#8230; Our little girl was slipping away from us.<\/p>\n<p>The doctors told us, <em>c\u2019est Isaure qui \u00e9crira son histoire<\/em> \u00bb \u2026<\/p>\n<p>At this point, no diagnosis had been made, but we understood that Isaure\u2019s life and our own would be far from what we had imagined.<\/p>\n<p>We were going to have to deal with this still unknown disease and have faith in a happy future.<\/p>\n<div id=\"s3gt_translate_tooltip_mini\" class=\"s3gt_translate_tooltip_mini_box\" style=\"background: initial !important; border: initial !important; border-radius: initial !important; border-spacing: initial !important; border-collapse: initial !important; direction: ltr !important; flex-direction: initial !important; font-weight: initial !important; height: initial !important; letter-spacing: initial !important; min-width: initial !important; max-width: initial !important; min-height: initial !important; max-height: initial !important; margin: auto !important; padding: initial !important; text-align: initial !important; width: initial !important; color: inherit !important; font-size: 13px !important; font-family: X-LocaleSpecific, sans-serif, Tahoma, Helvetica !important; line-height: 13px !important; vertical-align: top !important;\">\n<div id=\"s3gt_translate_tooltip_mini_logo\" class=\"s3gt_translate_tooltip_mini\" title=\"Translate the selected text\"><\/div>\n<div id=\"s3gt_translate_tooltip_mini_sound\" class=\"s3gt_translate_tooltip_mini\" title=\"Read\"><\/div>\n<div id=\"s3gt_translate_tooltip_mini_copy\" class=\"s3gt_translate_tooltip_mini\" title=\"Copy text to clipboard\"><\/div>\n<\/div>\n<\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-5{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-5 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-5{width:50% !important;order : 0;}.fusion-builder-column-5 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-5{width:100% !important;order : 0;}.fusion-builder-column-5 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-6 fusion_builder_column_1_2 1_2 fusion-flex-column\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div style=\"text-align:center;\"><span class=\" fusion-imageframe imageframe-none imageframe-3 hover-type-none\"><img decoding=\"async\" width=\"1930\" height=\"2560\" title=\"story 3\" src=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/story-3-scaled.jpg\" alt class=\"img-responsive wp-image-332\" srcset=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/story-3-200x265.jpg 200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/story-3-400x530.jpg 400w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/story-3-600x796.jpg 600w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/story-3-800x1061.jpg 800w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/story-3-1200x1591.jpg 1200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/story-3-scaled.jpg 1930w\" sizes=\"(max-width: 640px) 100vw, 800px\" \/><\/span><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-6{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-6 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-6{width:50% !important;order : 0;}.fusion-builder-column-6 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-6{width:100% !important;order : 0;}.fusion-builder-column-6 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-flex-container.fusion-builder-row-4{ padding-top : 0px;margin-top : 60px;padding-right : 0px;padding-bottom : 0px;margin-bottom : 20px;padding-left : 0px;}<\/style><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-5 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"background-color: rgba(255,255,255,0);background-position: center center;background-repeat: no-repeat;border-width: 0px 0px 0px 0px;border-color:#e2e2e2;border-style:solid;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-stretch\" style=\"max-width:1497.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-7 fusion_builder_column_1_2 1_2 fusion-flex-column\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div style=\"text-align:center;\"><span class=\" fusion-imageframe imageframe-none imageframe-4 hover-type-none\"><img decoding=\"async\" width=\"2560\" height=\"1920\" title=\"OLYMPUS DIGITAL CAMERA\" src=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8950-scaled.jpg\" alt class=\"img-responsive wp-image-557\" srcset=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8950-200x150.jpg 200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8950-400x300.jpg 400w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8950-600x450.jpg 600w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8950-800x600.jpg 800w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8950-1200x900.jpg 1200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8950-scaled.jpg 2560w\" sizes=\"(max-width: 640px) 100vw, 800px\" \/><\/span><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-7{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-7 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-7{width:50% !important;order : 0;}.fusion-builder-column-7 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-7{width:100% !important;order : 0;}.fusion-builder-column-7 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-8 fusion_builder_column_1_2 1_2 fusion-flex-column etincelles\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><style type=\"text\/css\">@media only screen and (max-width:1024px) {.fusion-title.fusion-title-4{margin-top:10px!important; margin-right:0px!important;margin-bottom:15px!important;margin-left:0px!important;}}@media only screen and (max-width:640px) {.fusion-title.fusion-title-4{margin-top:10px!important; margin-right:0px!important;margin-bottom:10px!important; margin-left:0px!important;}}<\/style><div class=\"fusion-title title fusion-title-4 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"margin-top:10px;margin-right:0px;margin-bottom:15px;margin-left:0px;\"><h2 class=\"title-heading-left\" style=\"margin:0;\">September 15, 2020: Isaure returns home<\/h2><\/div><div class=\"fusion-text fusion-text-8\"><p>After long months in the hospital, Isaure&#8217;s condition was still concerning, but this return home that we were not expecting, or even imagining, was finally on the horizon!<\/p>\n<p>We were so happy and at the same time so worried because her condition was still very unstable and she still needed permanent medical attention.<\/p>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Traduction\" data-ved=\"2ahUKEwjNgbKLvYeEAxWgRqQEHSrwCJ4Q3ewLegQIBRAT\"><span class=\"Y2IQFc\" lang=\"en\">We had to reorganize our daily lives and learn to live and manage the illness at home.<\/span><\/p>\n<p>To help Isaure to progress despite her illness, we have also set up a follow-up at home with a physiotherapist, a psychomotricist and a speech therapist <span class=\"Y2IQFc\" lang=\"en\">who come several times a week.<\/span><\/p>\n<p>The crises are always omnipresent and the situation is difficult and sometimes exhausting but the help and support of our relatives are precious and allow us to face the most difficult times.<\/p>\n<\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-8{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-8 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-8{width:50% !important;order : 0;}.fusion-builder-column-8 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-8{width:100% !important;order : 0;}.fusion-builder-column-8 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-flex-container.fusion-builder-row-5{ padding-top : 0px;margin-top : 60px;padding-right : 0px;padding-bottom : 0px;margin-bottom : 20px;padding-left : 0px;}<\/style><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-6 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"background-color: #f4d0d0;background-position: center center;background-repeat: no-repeat;border-width: 0px 0px 0px 0px;border-color:#e2e2e2;border-style:solid;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-stretch fusion-flex-justify-content-center\" style=\"max-width:1497.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-9 fusion_builder_column_1_3 1_3 fusion-flex-column\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div class=\"fusion-text fusion-text-9 sous-titre\" style=\"font-size:50px;line-height:1.3;color:#ea5e58;\"><p>Then, the diagnosis was finally made:<\/p>\n<p>the mutation of the KCNT1 gene,<br \/>\na rare genetic disease.<\/p>\n<\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-9{width:33.333333333333% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-9 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 5.76%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 5.76%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-9{width:33.333333333333% !important;order : 0;}.fusion-builder-column-9 > .fusion-column-wrapper {margin-right : 5.76%;margin-left : 5.76%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-9{width:100% !important;order : 0;}.fusion-builder-column-9 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-10 fusion_builder_column_2_3 2_3 fusion-flex-column etincelles\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div class=\"fusion-text fusion-text-10 sous-titre\" style=\"font-size:50px;line-height:1.4;\"><p>It was the most complete unknown &#8230;<\/p>\n<\/div><div class=\"fusion-text fusion-text-11\"><p>Our first question was about the origin of this disease and what was the prognosis for Isaure.<\/p>\n<p>&#8220;<em>These children generally cannot walk nor speak and they have a short life expectancy<\/em> &#8221; these are the few words we were told about this disease and the responses we got&#8230;<\/p>\n<p>We were stunned and felt alone to face the future.<\/p>\n<p>Despite the difficulty, we were determined to stand up for our little girl, and we embarked on a new fight to save Isaure and the other children affected by this disease.<\/p>\n<\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-10{width:66.666666666667% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-10 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 2.88%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 2.88%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-10{width:66.666666666667% !important;order : 0;}.fusion-builder-column-10 > .fusion-column-wrapper {margin-right : 2.88%;margin-left : 2.88%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-10{width:100% !important;order : 0;}.fusion-builder-column-10 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-flex-container.fusion-builder-row-6{ padding-top : 60px;margin-top : 40px;padding-right : 0px;padding-bottom : 40px;margin-bottom : 0px;padding-left : 0px;}<\/style><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-7 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"background-color: rgba(255,255,255,0);background-position: center center;background-repeat: no-repeat;border-width: 0px 0px 0px 0px;border-color:#e2e2e2;border-style:solid;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-stretch\" style=\"max-width:1497.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-11 fusion_builder_column_1_2 1_2 fusion-flex-column etincelles\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><style type=\"text\/css\">@media only screen and (max-width:1024px) {.fusion-title.fusion-title-5{margin-top:10px!important; margin-right:0px!important;margin-bottom:15px!important;margin-left:0px!important;}}@media only screen and (max-width:640px) {.fusion-title.fusion-title-5{margin-top:10px!important; margin-right:0px!important;margin-bottom:10px!important; margin-left:0px!important;}}<\/style><div class=\"fusion-title title fusion-title-5 fusion-sep-none fusion-title-text fusion-title-size-two\" style=\"margin-top:10px;margin-right:0px;margin-bottom:15px;margin-left:0px;\"><h2 class=\"title-heading-left\" style=\"margin:0;\"><p>The creation of the<br \/>\n\u201cA spark for Isaure\u2026 and genetic research\u201d endowment fund.<\/p><\/h2><\/div><div class=\"fusion-text fusion-text-12\"><p>After the diagnosis was announced, we carried out research and contacted all the KCNT1 specialists that we managed to identify around the world to help us save Isaure.<\/p>\n<p>Giving up was not an option!<\/p>\n<p>Under the impetus of Professor Rima NABBOUT, we were put in contact with the association &#8220;JYL KCNT1&#8221; which is a real support for families. We decided to get involved in advancing research and saving our children.<\/p>\n<p>This is how the endowment fund \u201cA spark for Isaure\u2026 and genetic research\u201d was born with the invaluable help of Isaure&#8217;s grandfather, our families, the DELSOL cabinet, the FORCE FOR GOOD Agency, and members of the Scientific Advisory Board who have done us the great honor of supporting us in this fight that has become our priority.<\/p>\n<\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-11{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-11 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-11{width:50% !important;order : 0;}.fusion-builder-column-11 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-11{width:100% !important;order : 0;}.fusion-builder-column-11 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-12 fusion_builder_column_1_2 1_2 fusion-flex-column\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-center fusion-content-layout-column\" style=\"background-position:left top;background-repeat:no-repeat;-webkit-background-size:cover;-moz-background-size:cover;-o-background-size:cover;background-size:cover;padding: 0px 0px 0px 0px;\"><div style=\"text-align:center;\"><span class=\" fusion-imageframe imageframe-none imageframe-5 hover-type-none\"><img decoding=\"async\" width=\"2560\" height=\"1920\" title=\"OLYMPUS DIGITAL CAMERA\" src=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8943-scaled.jpg\" alt class=\"img-responsive wp-image-563\" srcset=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8943-200x150.jpg 200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8943-400x300.jpg 400w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8943-600x450.jpg 600w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8943-800x600.jpg 800w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8943-1200x900.jpg 1200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2024\/01\/IMG_8943-scaled.jpg 2560w\" sizes=\"(max-width: 640px) 100vw, 800px\" \/><\/span><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-builder-column-12{width:50% !important;margin-top : 0px;margin-bottom : 20px;}.fusion-builder-column-12 > .fusion-column-wrapper {padding-top : 0px !important;padding-right : 0px !important;margin-right : 3.84%;padding-bottom : 0px !important;padding-left : 0px !important;margin-left : 3.84%;}@media only screen and (max-width:1024px) {.fusion-body .fusion-builder-column-12{width:50% !important;order : 0;}.fusion-builder-column-12 > .fusion-column-wrapper {margin-right : 3.84%;margin-left : 3.84%;}}@media only screen and (max-width:640px) {.fusion-body .fusion-builder-column-12{width:100% !important;order : 0;}.fusion-builder-column-12 > .fusion-column-wrapper {margin-right : 1.92%;margin-left : 1.92%;}}<\/style><\/div><\/div><style type=\"text\/css\">.fusion-body .fusion-flex-container.fusion-builder-row-7{ padding-top : 60px;margin-top : 0px;padding-right : 0px;padding-bottom : 40px;margin-bottom : 0px;padding-left : 0px;}<\/style><\/div><\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"100-width.php","meta":{"footnotes":""},"class_list":["post-413","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/uneetincellepourisaure.com\/en\/wp-json\/wp\/v2\/pages\/413","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/uneetincellepourisaure.com\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/uneetincellepourisaure.com\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/uneetincellepourisaure.com\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/uneetincellepourisaure.com\/en\/wp-json\/wp\/v2\/comments?post=413"}],"version-history":[{"count":21,"href":"https:\/\/uneetincellepourisaure.com\/en\/wp-json\/wp\/v2\/pages\/413\/revisions"}],"predecessor-version":[{"id":565,"href":"https:\/\/uneetincellepourisaure.com\/en\/wp-json\/wp\/v2\/pages\/413\/revisions\/565"}],"wp:attachment":[{"href":"https:\/\/uneetincellepourisaure.com\/en\/wp-json\/wp\/v2\/media?parent=413"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}