{"id":6159,"date":"2023-03-14T14:12:42","date_gmt":"2023-03-14T18:12:42","guid":{"rendered":"https:\/\/loeysdietzcanada.org\/?p=6159"},"modified":"2023-03-14T14:12:37","modified_gmt":"2023-03-14T18:12:37","slug":"lhistoire-de-kimberly-et-logan","status":"publish","type":"post","link":"https:\/\/loeysdietzcanada.org\/fr\/lhistoire-de-kimberly-et-logan\/","title":{"rendered":"L’histoire de Kimberly et Logan : Parent d’un enfant atteint du syndrome de Loeys-Dietz"},"content":{"rendered":"

\"\"En tant que parent d\u2019un enfant atteint du syndrome de Loeys-Dietz<\/strong> de type\u00a02, vous ne savez jamais ce qui vous attend. Lorsque j\u2019\u00e9tais enceinte de cinq mois, on m\u2019a dit que Logan ne survivrait pas \u00e0 la naissance, mais personne ne pouvait me dire ce qui n\u2019allait pas. Le voir grandir et savoir qu\u2019il est diff\u00e9rent est difficile pour moi en tant que parent.<\/p>\n

Logan et son diagnostic du syndrome de Loeys-Dietz<\/strong><\/p>\n

En octobre 2018, on nous a dit que Logan \u00e9tait atteint du syndrome de Loeys-Dietz et je ne savais pas comment r\u00e9agir surtout que je n\u2019avais aucune id\u00e9e de ce que c\u2019\u00e9tait. Comment allais-je expliquer tout cela \u00e0 Logan, \u00e0 son fr\u00e8re a\u00een\u00e9 Ryan et \u00e0 sa petite s\u0153ur Kaylee, ainsi qu\u2019aux autres.<\/p>\n

Apr\u00e8s des recherches et une rencontre avec ses m\u00e9decins, j\u2019ai r\u00e9alis\u00e9 rapidement que le syndrome devait \u00eatre bien g\u00e9r\u00e9, qu\u2019il fallait s\u2019assurer que les m\u00e9dicaments soient donn\u00e9s et les tests faits et qu\u2019il fallait faire un suivi aupr\u00e8s des m\u00e9decins.<\/p>\n

Pers\u00e9v\u00e9rer face au syndrome de Loeys-Dietz<\/strong><\/p>\n

Je comprends maintenant que chaque cas est diff\u00e9rent et que Logan pourrait \u00eatre affect\u00e9 diff\u00e9remment en vieillissant. Certains jours, la douleur et l\u2019inconfort sont plus importants. M\u00eame s\u2019il a des limites, je lui interdis de dire qu\u2019il ne peut pas faire quelque chose lorsque je sais qu\u2019il en est capable. Ce que j\u2019ai appris, c\u2019est qu\u2019avec la vie viennent les ajustements et l\u2019incertitude, mais tant que vous aurez une longueur d\u2019avance et que vous pers\u00e9v\u00e9rerez, vous n\u2019aurez aucun regret.\u00a0\u00bb #GUERRIERSLD<\/p>\n

Histoires de SLD<\/strong><\/p>\n

Pour plus d\u2019histoires sur le syndrome de Loeys-Dietz, comme l\u2019histoire d\u2019Amiel,\u00a0cliquez ici<\/a>.<\/p>\n

Trouver de l\u2019aide pour le SLD<\/strong><\/p>\n

Pour trouver un soutien par les pairs et des informations sur les ressources pour le SLD,\u00a0contactez-nous<\/a>. Si vous \u00eates parent d’un enfant atteint du syndrome de Loeys-Dietz, nous pouvons vous fournir des informations sur les ressources pour les proches aidants et les enfants.<\/p>\n","protected":false},"excerpt":{"rendered":"

En tant que parent d\u2019un enfant atteint du syndrome de Loeys-Dietz de type\u00a02, vous ne savez jamais ce qui vous attend. Lorsque j\u2019\u00e9tais enceinte de cinq mois, on m\u2019a dit […]<\/p>\n","protected":false},"author":3,"featured_media":6074,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[46],"tags":[],"class_list":["post-6159","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignages-de-patients-et-soutien"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/posts\/6159","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/comments?post=6159"}],"version-history":[{"count":2,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/posts\/6159\/revisions"}],"predecessor-version":[{"id":6161,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/posts\/6159\/revisions\/6161"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/media\/6074"}],"wp:attachment":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/media?parent=6159"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/categories?post=6159"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/tags?post=6159"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}