{"id":478,"date":"2025-01-31T16:39:54","date_gmt":"2025-01-31T21:39:54","guid":{"rendered":"https:\/\/telethon.cheofoundation.com\/telethon-story\/lhistoire-du-cece\/"},"modified":"2026-05-22T18:36:49","modified_gmt":"2026-05-22T22:36:49","slug":"lhistoire-de-mirai","status":"publish","type":"tstories","link":"https:\/\/telethon.cheofoundation.com\/fr\/telethon-story\/lhistoire-de-mirai\/","title":{"rendered":"L\u2019histoire de Mirai"},"content":{"rendered":"\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-group is-nowrap is-layout-flex wp-container-core-group-is-layout-6c531013 wp-block-group-is-layout-flex\">\n<figure class=\"wp-block-image size-full position-icon position-center-right pull-up\"><img loading=\"lazy\" decoding=\"async\" width=\"135\" height=\"125\" src=\"https:\/\/telethon.cheofoundation.com\/wp-content\/uploads\/sites\/3\/2025\/01\/Bear.png\" alt=\"\" class=\"wp-image-107\"\/><\/figure>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\">Rencontrez Mirai<\/h2>\n\n\n\n<p class=\"has-text-align-center narrow-width-large\" style=\"padding-right:300px;padding-left:300px\">Mirai \u00e9tait encore b\u00e9b\u00e9 lorsqu\u2019il a commenc\u00e9 \u00e0 faire des crises d\u2019\u00e9pilepsie fr\u00e9quentes. Elles \u00e9taient caus\u00e9es par une forme rare d\u2019\u00e9pilepsie appel\u00e9e le syndrome de Dravet. Lui et sa maman passaient tellement de temps au CHEO qu\u2019une valise \u00e9tait toujours pr\u00eate pr\u00e8s de la porte pour la prochaine visite \u00e0 l\u2019h\u00f4pital. Puis, \u00e0 l\u2019\u00e2ge de trois ans, Mirai a subi un grave \u00e9pisode de crises d\u2019\u00e9pilepsie en grappes r\u00e9sistantes aux m\u00e9dicaments. Mirai a surv\u00e9cu, mais il a perdu sa mobilit\u00e9 et sa vision, ainsi que sa capacit\u00e9 de manger et de communiquer verbalement. Sa m\u00e8re, Lillian, raconte que le petit gar\u00e7on actif et bavard qu\u2019elle connaissait n\u2019\u00e9tait plus le m\u00eame. \u00c0 Roger Neilson, soins palliatifs pour enfants, Mirai re\u00e7oit les soins palliatifs dont il a besoin, tandis que Lillian a acc\u00e8s \u00e0 du soutien gr\u00e2ce \u00e0 des services de counseling et \u00e0 du r\u00e9pit essentiel pour l\u2019aider dans son r\u00f4le d\u2019aidante \u00e0 temps plein aupr\u00e8s de Mirai. Elle affirme que sa \u00ab famille \u00bb de Roger Neilson, soins palliatifs pour enfants l\u2019a aid\u00e9e \u00e0 se concentrer sur les petits moments de bonheur au quotidien, \u00e0 trouver un sentiment d\u2019appartenance et \u00e0 cr\u00e9er de pr\u00e9cieux souvenirs avec son fils ador\u00e9.       <\/p>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:60px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-columns content-video is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-cover\" style=\"border-style:none;border-width:0px;min-height:100px;aspect-ratio:unset;\"><span aria-hidden=\"true\" class=\"wp-block-cover__background has-dkpurple-background-color has-background-dim-100 has-background-dim\"><\/span><div class=\"wp-block-cover__inner-container is-layout-constrained wp-block-cover-is-layout-constrained\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:62%\">\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Mirai - CHEO Telethon 2026\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/CpbDPJwMtSo?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p class=\"has-text-align-right has-small-font-size\"><strong>La vid\u00e9o est seulement en anglais.<\/strong><\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:38%\">\n<h2 class=\"wp-block-heading has-text-align-center has-yellow-color has-text-color has-link-color wp-elements-48316056fef7a48151bd03fa4d198cc0\" style=\"padding-right:18px;padding-left:18px;font-size:34px\">Les dons seront jumel\u00e9s jusqu\u2019\u00e0 concurrence de 15,000$<\/h2>\n\n\n\n<figure class=\"wp-block-image aligncenter size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"220\" height=\"120\" src=\"https:\/\/telethon.cheofoundation.com\/wp-content\/uploads\/sites\/3\/2025\/01\/CanArk_logo_white.png\" alt=\"CanArk logo with white bg\" class=\"wp-image-687\" style=\"object-fit:cover\"\/><\/figure>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-yellow-background-color has-background wp-element-button\" href=\"https:\/\/giving.cheofoundation.com\/page\/FUNRNQCBNXM?_lang=fr-CA\" target=\"_blank\" rel=\"noreferrer noopener\">Donnez maintenant et votre don sera jumel\u00e9<\/a><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div><\/div>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:60px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\">Un message CanArk Paving<\/h2>\n\n\n\n<div style=\"height:18px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-columns content-video is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-cover is-light\" style=\"border-style:none;border-width:0px;min-height:100px;aspect-ratio:unset;\"><span aria-hidden=\"true\" class=\"wp-block-cover__background has-medturquoise-background-color has-background-dim-100 has-background-dim\"><\/span><div class=\"wp-block-cover__inner-container is-layout-constrained wp-block-cover-is-layout-constrained\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:100%\">\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"CanArk - CHEO Telethon 2026\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/KiIrHosagrc?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p class=\"has-text-align-right has-dkpurple-color has-text-color has-link-color has-small-font-size wp-elements-0199ca6e609893e6dc779ee7815a6492\"><strong>La vid\u00e9o est seulement en anglais.<\/strong><\/p>\n<\/div>\n<\/div>\n<\/div><\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>D\u00e9couvrez comment Mirai et Lillian retrouvent la joie gr\u00e2ce au soutien de Roger Neilson, soins palliatifs pour enfants.<\/p>\n","protected":false},"featured_media":669,"parent":0,"template":"","class_list":["post-478","tstories","type-tstories","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>L\u2019histoire de Mirai | T\u00e9l\u00e9thon du CHEO<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link 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