{"id":3360,"date":"2023-01-09T15:42:47","date_gmt":"2023-01-09T15:42:47","guid":{"rendered":"https:\/\/cureclcn4.org\/rencontrez-mckenzie\/"},"modified":"2023-01-09T15:42:48","modified_gmt":"2023-01-09T15:42:48","slug":"rencontrez-mckenzie","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/fr\/rencontrez-mckenzie\/","title":{"rendered":"Rencontrez McKenzie"},"content":{"rendered":"

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Rencontrez McKenzie (\u00c9tats-Unis)<\/h2>\n

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ANGLAIS<\/strong><\/p>\n

McKenzie est n\u00e9e d’un magnifique b\u00e9b\u00e9 de 7 lb 10 oz en f\u00e9vrier 2013. Elle est n\u00e9e apr\u00e8s une grossesse normale et un travail et un accouchement assez faciles. J’ai pris des vitamines pr\u00e9natales, je n’ai pas bu, je n’ai pas fum\u00e9 et j’ai suivi tous les ordres du m\u00e9decin. Puis, quand Kenzie \u00e9tait b\u00e9b\u00e9, elle avait la jaunisse et souffrait toujours de reflux. Elle ne voulait pas t\u00e9ter et ne tol\u00e9rait aucun lait maternis\u00e9 apr\u00e8s avoir constamment chang\u00e9 de formule en fonction des recommandations du p\u00e9diatre.<\/p>\n

Nous avons donc plaid\u00e9 en sa faveur et lui avons fait passer d’autres tests : \u00e9tudes de la d\u00e9glutition, IRM, tomodensitom\u00e9trie, tests d’allergie, et presque tout est revenu \u00ab\u00a0normal\u00a0\u00bb, sauf les tests d’allergie. Nous avons donc compl\u00e8tement chang\u00e9 son r\u00e9gime alimentaire. Elle a \u00e9galement commenc\u00e9 une th\u00e9rapie physique, de d\u00e9veloppement, d’ergoth\u00e9rapie et d’orthophonie \u00e0 l’\u00e2ge de 9 mois. On lui a diagnostiqu\u00e9 de l’asthme et elle a commenc\u00e9 un traitement. Nous avons pass\u00e9 des tests auditifs et des tests de vision. Nous avons eu des tubes et des amygdales enlev\u00e9s. Nous avons vu des neurologues p\u00e9diatriques, des p\u00e9diatres du d\u00e9veloppement, des m\u00e9decins ORL, des sp\u00e9cialistes des allergies. Nous avons \u00e9limin\u00e9 des tonnes de choses de son r\u00e9gime alimentaire et chang\u00e9 constamment de m\u00e9dicaments. Nous l’avons eu en heures de th\u00e9rapies hebdomadaires pendant 8 ans.<\/p>\n

Mais pendant des ann\u00e9es, tout ce que nous obtenions des r\u00e9sultats des tests \u00e9tait \u00ab\u00a0retard de d\u00e9veloppement\u00a0\u00bb et \u00ab\u00a0tonus faible ou hypotonie\u00a0\u00bb. Alors j’ai continu\u00e9 \u00e0 faire pression et nous avons continu\u00e9 \u00e0 plaider. Nous \u00e9tions sur une liste d’attente depuis deux ans pour voir un g\u00e9n\u00e9ticien et nous avons en fait d\u00e9m\u00e9nag\u00e9 dans l’Indiana dans l’espoir d’\u00eatre admis plus rapidement. Nous nous rendons finalement chez Riley en 2017 et obtenons notre premier vrai diagnostic ! McKenzie a \u00e9t\u00e9 diagnostiqu\u00e9e avec le CLCN4, une mutation g\u00e9n\u00e9tique extr\u00eamement rare. Si rare que seules 50 \u00e0 100 personnes dans le monde ont \u00e9t\u00e9 diagnostiqu\u00e9es. Par cons\u00e9quent, tr\u00e8s peu d’essais cliniques ou de recherches ont \u00e9t\u00e9 r\u00e9alis\u00e9s. On nous a rassur\u00e9s : comme pour tout, elle continuera \u00e0 se d\u00e9velopper et ne r\u00e9gressera pas. Elle continue de progresser.<\/p>\n

Cependant, apr\u00e8s m’\u00eatre assise dans les bureaux des m\u00e9decins et dans les salles d’attente des th\u00e9rapeutes et avoir fait pression pour cet enfant pendant 4 ans, 2017, apr\u00e8s son diagnostic, a \u00e9t\u00e9 la premi\u00e8re fois que je me suis autoris\u00e9e \u00e0 faire mon deuil. Je n’ai jamais voulu qu’elle soit mise dans une bo\u00eete ou qu’elle soit \u00e9tiquet\u00e9e \u00ab\u00a0besoins sp\u00e9ciaux\u00a0\u00bb ou \u00ab\u00a0diff\u00e9rente\u00a0\u00bb ou pire. Parce que la v\u00e9rit\u00e9 de qui McKenzie est un bel enfant de Dieu. Elle est f\u00e9roce ! Elle est petite mais elle est puissante. Elle s’est tellement battue dans sa petite vie. Elle est hilarante, elle est pleine de personnalit\u00e9 ! M\u00eame si elle ne parle pas, elle fait conna\u00eetre ses pens\u00e9es \u00e0 ceux qu’elle aime et en qui elle a confiance. Elle est une joie et a apport\u00e9 tant de gu\u00e9rison \u00e0 tous les grands enfants qui ont \u00e9t\u00e9 sous notre garde. Elle a fait preuve de compassion et d’empathie envers leurs c\u0153urs bless\u00e9s et a partag\u00e9 ses parents et chacun des grands enfants est tomb\u00e9 amoureux d’elle parce qu’elle les a si bien aim\u00e9s.<\/p>\n

En 2018, nous sommes retourn\u00e9s \u00e0 l’h\u00f4pital car elle a commenc\u00e9 \u00e0 faire de grosses crises. Ils pensent qu’il y a un lien entre sa mutation g\u00e9n\u00e9tique et ses crises. Les m\u00e9decins pensent que lorsqu’elle sera malade, elle aura probablement une crise d’\u00e9pilepsie. Donc maintenant, en plus de s’inqui\u00e9ter qu’un simple rhume puisse se transformer en bronchite et en pneumonie pour notre enfant asthmatique et nous conduire \u00e0 l’h\u00f4pital, nous devons combattre des crises d’\u00e9pilepsie. On lui a en outre diagnostiqu\u00e9 une \u00e9pilepsie.<\/p>\n

En 2020, apr\u00e8s avoir travaill\u00e9 avec un th\u00e9rapeute comportemental pendant un an et sachant que McKenzie \u00e9tait tellement frustr\u00e9e par son manque de communication. Nous savions que l’ABA \u00e9tait la prochaine \u00e9tape pour son d\u00e9veloppement. Elle a donc subi un test suppl\u00e9mentaire pour l’autisme et a obtenu ce label \u00e9galement, ce qui lui a permis d’int\u00e9grer un merveilleux programme ABA.<\/p>\n

McKenzie continue \u00e0 grandir et \u00e0 faire de nouveaux progr\u00e8s chaque jour. Elle devient plus coordonn\u00e9e, plus \u00e0 l’\u00e9coute et moins irrit\u00e9e. Notre plus grande pri\u00e8re pour McKenzie est de d\u00e9velopper sa communication afin qu’elle ne soit pas aussi stress\u00e9e et que nous puissions toujours comprendre et aider les autres \u00e0 la comprendre aussi.<\/p>\n

Nos r\u00eaves \u00e0 long terme pour McKenzie sont d’\u00eatre en bonne sant\u00e9 et heureuse. Lire au niveau du CE2, \u00e9crire, avoir un emploi et, id\u00e9alement, pouvoir vivre seule en tant que membre \u00e0 part enti\u00e8re de sa communaut\u00e9.<\/p>\n

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Si vous souhaitez soutenir McKenzie et les autres enfants atteints du syndrome CLCN4, pensez \u00e0 faire un don \u00e0 Cure CLCN4. <\/strong><\/span> <\/strong><\/span><\/p>\n

[\/et_pb_text][et_pb_button button_url=\u00a0\u00bbhttps:\/\/www.paypal.com\/donate?hosted_button_id=DFUAQJX8LFB8S\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb button_text=\u00a0\u00bbFaites un don maintenant \u00a0\u00bb button_alignment=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.9.3″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb22px\u00a0\u00bb button_text_color=\u00a0\u00bb#ffffff\u00a0\u00bb button_bg_color=\u00a0\u00bb#12876f\u00a0\u00bb button_border_width=\u00a0\u00bb0px\u00a0\u00bb button_border_color=\u00a0\u00bb#f0b800″ button_border_radius=\u00a0\u00bb4px\u00a0\u00bb button_letter_spacing=\u00a0\u00bb0px\u00a0\u00bb button_icon_color=\u00a0\u00bb#000000″][\/et_pb_button][et_pb_text _builder_version=\u00a0\u00bb4.5.8″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb]<\/p>\n

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Prenez contact avec nous. Participez.<\/h2>\n

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Rencontrez McKenzie (\u00c9tats-Unis) ANGLAIS McKenzie est n\u00e9e d’un magnifique b\u00e9b\u00e9 de 7 lb 10 oz en f\u00e9vrier 2013. Elle est n\u00e9e apr\u00e8s une grossesse normale et un travail et un accouchement assez faciles. J’ai pris des vitamines pr\u00e9natales, je n’ai pas bu, je n’ai pas fum\u00e9 et j’ai suivi tous les ordres du m\u00e9decin. Puis, […]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-3360","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/pages\/3360","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/comments?post=3360"}],"version-history":[{"count":2,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/pages\/3360\/revisions"}],"predecessor-version":[{"id":3362,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/pages\/3360\/revisions\/3362"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/media?parent=3360"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}