{"id":344,"date":"2021-11-27T15:54:40","date_gmt":"2021-11-27T14:54:40","guid":{"rendered":"https:\/\/uneetincellepourisaure.com\/isaures-story\/"},"modified":"2021-11-27T18:08:08","modified_gmt":"2021-11-27T17:08:08","slug":"isaures-story","status":"publish","type":"page","link":"https:\/\/uneetincellepourisaure.com\/en\/isaures-story\/","title":{"rendered":"test"},"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;\">L\u2019HISTOIRE D\u2019ISAURE<\/h2><\/div><div class=\"fusion-text fusion-text-1 sous-titre\"><p>Comme quelques milliers de parents \u00e0 travers le monde, Marie et Henri sont confront\u00e9s \u00e0 la maladie orpheline de leur enfant. Aujourd\u2019hui, les maladies g\u00e9n\u00e9tiques rares souffrent encore d\u2019un d\u00e9ficit d\u2019investissement et donc de recherche, plongeant les parents et les fratries dans un immense bain sans bou\u00e9e pour se raccrocher. Face \u00e0 eux, pas ou peu de r\u00e9ponses, aucune proposition de traitement, une grande inconnue\u2026 qui laisse entrevoir un quotidien pesant et anxiog\u00e8ne.<\/p>\n<\/div><div class=\"fusion-text fusion-text-2\"><p>Si Marie et Henri acceptent tr\u00e8s vite la situation, ils refusent la r\u00e9signation. Quel avenir pour leur petite fille ? Pour Isaure, pour Octave, pour leurs proches et pour toutes les familles confront\u00e9es \u00e0 la maladie, ils ont d\u00e9cid\u00e9 de se battre. C\u2019est donc pour soutenir les projets de recherches scientifiques et leurs applications cliniques pour le traitement de l\u2019enc\u00e9phalopathie li\u00e9e \u00e0 la mutation du g\u00e8ne KCNT1 qu\u2019ils ont cr\u00e9\u00e9 : \u00ab Une \u00e9tincelle pour Isaure\u2026 et la recherche g\u00e9n\u00e9tique \u00bb.<\/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 et Henri,<br \/>\nparents d\u2019Isaure,<br \/>\nnous racontent\u2026<\/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;\">Le 28 mars 2020 : la naissance d\u2019Isaure<\/h2><\/div><div class=\"fusion-text fusion-text-4\"><p>\u00c0 sa naissance, Isaure \u00e9tait une petite fille ravissante et, en apparence, en excellente sant\u00e9.<\/p>\n<p>Nous \u00e9tions combl\u00e9s et profitions de nos premi\u00e8res semaines avec Isaure et Octave, son grand-fr\u00e8re, loin d\u2019imaginer le tsunami qui allait s\u2019abattre sur notre famille quelques semaines plus tard\u2026<\/p>\n<p>Isaure se d\u00e9veloppait tout \u00e0 fait normalement et nous faisait d\u00e9j\u00e0 ses premiers sourires, pour notre plus grand bonheur, sans que nous puissions imaginer qu\u2019ils dispara\u00eetraient \u2026<\/p>\n<p>Apr\u00e8s ces quelques semaines entre parenth\u00e8ses, notre vie a bascul\u00e9\u2026<\/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=\"Traduire le texte s\u00e9lectionn\u00e9\"><\/div>\n<div id=\"s3gt_translate_tooltip_mini_sound\" class=\"s3gt_translate_tooltip_mini\" title=\"Lecture\"><\/div>\n<div id=\"s3gt_translate_tooltip_mini_copy\" class=\"s3gt_translate_tooltip_mini\" title=\"Copier le texte dans le presse-papiers\"><\/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;\">9 juin 2020 : l\u2019apparition des premiers sympt\u00f4mes et l\u2019hospitalisation \u00e0 l\u2019h\u00f4pital Femme M\u00e8re Enfants \u00e0 Lyon<\/h2><\/div><div class=\"fusion-text fusion-text-5\"><p>Les premi\u00e8res crises d&#8217;\u00e9pilepsie d\u2019Isaure sont apparues \u00e0 l&#8217;\u00e2ge de 2 mois. Nous commencions \u00e0 sentir que quelque chose n\u2019\u00e9tait pas normal\u2026<\/p>\n<p>Ces premiers mouvements puis ces absences qui pouvaient sembler anodins, nous avaient pourtant alert\u00e9s.<\/p>\n<p>En quelques jours seulement, les crises se sont multipli\u00e9es et nous avons conduit Isaure \u00e0 l\u2019h\u00f4pital, terrifi\u00e9s mais confiants.<\/p>\n<p>Nous \u00e9tions \u00e0 mille lieux d\u2019imaginer le calvaire vers lequel nous nous dirigions&#8230;<\/p>\n<p>Ce fut le d\u00e9but de plus de 3 mois d\u2019hospitalisation et de jours particuli\u00e8rement difficiles pour Isaure et nous tous.<\/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>A chaque examen m\u00e9dical pass\u00e9, nous retenions notre souffle, inquiets de savoir ce que l&#8217;on allait nous annoncer.<\/p>\n<p>Les premiers r\u00e9sultats \u00e9tant normaux, nous \u00e9tions soulag\u00e9s mais pourtant aucune mol\u00e9cule ne parvenait \u00e0 stopper les crises d\u2019Isaure et \u00e0 la soulager.<\/p>\n<\/div><div class=\"fusion-text fusion-text-7\"><p>Ces crises qui \u00e9taient de plus en plus fr\u00e9quentes et violentes, n\u00e9cessitant des reprises \u00e0 l\u2019oxyg\u00e8ne et l\u2019administration de traitement de choc quasiment tous les jours, nous terrifiaient.<\/p>\n<p>Nous \u00e9tions impuissants face \u00e0 cette situation, qui ne laissait plus aucun r\u00e9pit \u00e0 notre petite fille.<\/p>\n<p>Le professionnalisme et le soutien de l\u2019ensemble des \u00e9quipes de l\u2019h\u00f4pital ne suffisaient plus et nous les sentions, eux aussi, parfois, d\u00e9munis face \u00e0 la situation critique dans laquelle se trouvait Isaure.<\/p>\n<p>Les jours, les semaines puis les mois passaient, et l\u2019\u00e9tat g\u00e9n\u00e9ral d\u2019Isaure se d\u00e9gradait, son sourire s\u2019\u00e9tait envol\u00e9, nos interactions avec elle devenues impossibles\u2026 Notre petite fille nous \u00e9chappait compl\u00e9tement\u2026<\/p>\n<p>Comme les m\u00e9decins nous le r\u00e9p\u00e9taient \u00ab <em>c\u2019est Isaure qui \u00e9crira son histoire<\/em> \u00bb \u2026<\/p>\n<p>A ce stade, le diagnostic n\u2019avait pas encore \u00e9t\u00e9 pos\u00e9 mais nous avions compris que notre vie et celle d\u2019Isaure seraient loin de ce que nous avions imagin\u00e9.<\/p>\n<p>Nous allions devoir composer avec cette maladie, encore inconnue, et \u00eatre heureux.<\/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=\"Traduire le texte s\u00e9lectionn\u00e9\"><\/div>\n<div id=\"s3gt_translate_tooltip_mini_sound\" class=\"s3gt_translate_tooltip_mini\" title=\"Lecture\"><\/div>\n<div id=\"s3gt_translate_tooltip_mini_copy\" class=\"s3gt_translate_tooltip_mini\" title=\"Copier le texte dans le presse-papiers\"><\/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=\"646\" height=\"915\" title=\"retour\" src=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/retour.png\" alt class=\"img-responsive wp-image-317\" srcset=\"https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/retour-200x283.png 200w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/retour-400x567.png 400w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/retour-600x850.png 600w, https:\/\/uneetincellepourisaure.com\/wp-content\/uploads\/2021\/08\/retour.png 646w\" sizes=\"(max-width: 640px) 100vw, 646px\" \/><\/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;\">15 septembre 2020 : le retour d\u2019Isaure \u00e0 la maison<\/h2><\/div><div class=\"fusion-text fusion-text-8\"><p>Apr\u00e8s de longs mois d\u2019hospitalisation, l\u2019\u00e9tat d\u2019Isaure \u00e9tait toujours inqui\u00e9tant mais ce retour chez nous que nous n\u2019attendions plus, voire parfois n\u2019imaginions plus, se profilait enfin !<\/p>\n<p>Nous \u00e9tions si heureux et en m\u00eame temps si inquiets car son \u00e9tat \u00e9tait encore tr\u00e8s instable et m\u00e9dicalis\u00e9.<\/p>\n<p>Quelques jours seulement avant notre sortie de l&#8217;h\u00f4pital, le destin a mis sur notre chemin, la merveilleuse Pauline, une jeune fille pleine de qualit\u00e9s, qui a largement contribu\u00e9 \u00e0 ce que le retour d&#8217;Isaure se passe bien et qui y contribue encore activement en prenant soin d&#8217;elle \u00e0 la maison.<\/p>\n<p>Pour aider Isaure \u00e0 progresser malgr\u00e9 sa maladie, nous avons \u00e9galement mis en place un suivi \u00e0 domicile avec une kin\u00e9sith\u00e9rapeute, une psychomotricienne et une orthophoniste.<\/p>\n<p>Les crises sont toujours omnipr\u00e9sentes et la situation difficile voire parfois \u00e9puisante mais l\u2019aide et le soutien de nos proches nous sont pr\u00e9cieux et nous permettent d\u2019affronter les moments plus difficiles.<\/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>Puis, le diagnostic a enfin \u00e9t\u00e9 pos\u00e9 :<\/p>\n<p>la mutation du g\u00e8ne KCNT1,<br \/>\nmaladie g\u00e9n\u00e9tique rare.<\/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>C\u2019\u00e9tait l\u2019inconnu le plus total\u2026<\/p>\n<\/div><div class=\"fusion-text fusion-text-11\"><p>Notre premi\u00e8re question a \u00e9t\u00e9 de savoir ce \u00e0 quoi correspondait cette maladie et quel \u00e9tait le pronostic pour Isaure.<\/p>\n<p>\u00ab <em>Ce sont des enfants qui g\u00e9n\u00e9ralement ne marchent pas, ne parlent pas et qui ont une esp\u00e9rance de vie courte<\/em> \u00bb voil\u00e0 les quelques mots pos\u00e9s sur cette maladie et les r\u00e9ponses avec lesquelles nous sommes rest\u00e9s\u2026<\/p>\n<p>Nous \u00e9tions abasourdis et nous sentions seuls pour affronter l\u2019avenir.<\/p>\n<p>Malgr\u00e9 la difficult\u00e9, nous \u00e9tions d\u00e9termin\u00e9s \u00e0 nous battre pour notre petite fille, et nous sommes lanc\u00e9s dans un nouveau combat pour sauver Isaure et les autres enfants touch\u00e9s par cette maladie.<\/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>La cr\u00e9ation du fonds de dotation<br \/>\n\u00ab Une \u00e9tincelle pour Isaure\u2026 et la recherche g\u00e9n\u00e9tique \u00bb<\/p><\/h2><\/div><div class=\"fusion-text fusion-text-12\"><p>Apr\u00e8s l\u2019annonce du diagnostic, nous avons effectu\u00e9 des recherches et pris contact avec tous les sp\u00e9cialistes du KCNT1 que nous avons r\u00e9ussi \u00e0 identifier, \u00e0 travers le monde, pour qu&#8217;ils nous viennent en aide pour sauver Isaure.<\/p>\n<p>Baisser les bras n\u2019\u00e9tait pas une option !<\/p>\n<p>Sous l\u2019impulsion du Professeur Rima NABBOUT, nous avons \u00e9t\u00e9 mis en contact avec l\u2019association \u00ab JYL KCNT1 \u00bb qui est d\u2019un v\u00e9ritable soutien pour les familles et avons, \u00e9galement, d\u00e9cid\u00e9s de nous engager pour faire avancer la recherche et sauver nos enfants.<\/p>\n<p>C\u2019est ainsi que le fonds de dotation \u00ab Une \u00e9tincelle pour Isaure\u2026 et la recherche g\u00e9n\u00e9tique \u00bb est n\u00e9 avec l\u2019aide pr\u00e9cieuse du Grand-p\u00e8re d\u2019Isaure, de nos familles, du Cabinet DELSOL, de l\u2019Agence FORCE FOR GOOD, et des membres du conseil scientifique qui nous ont fait l\u2019honneur de nous accompagner dans ce combat devenu notre priorit\u00e9.<\/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 : 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