{"id":7062,"date":"2021-04-06T10:51:03","date_gmt":"2021-04-06T15:51:03","guid":{"rendered":"https:\/\/habilitas.ca\/non-classifiee\/chiara\/"},"modified":"2025-10-15T11:14:36","modified_gmt":"2025-10-15T16:14:36","slug":"chiara","status":"publish","type":"post","link":"https:\/\/habilitas.ca\/fr\/chiara\/","title":{"rendered":"Chiara"},"content":{"rendered":"

[et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb3.22″][et_pb_row _builder_version=\u00a0\u00bb3.25″ background_size=\u00a0\u00bbinitial\u00a0\u00bb background_position=\u00a0\u00bbtop_left\u00a0\u00bb background_repeat=\u00a0\u00bbrepeat\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb3.25″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_post_title meta=\u00a0\u00bboff\u00a0\u00bb featured_image=\u00a0\u00bboff\u00a0\u00bb _builder_version=\u00a0\u00bb3.27.3″ text_orientation=\u00a0\u00bbcenter\u00a0\u00bb][\/et_pb_post_title][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb3.25″ background_size=\u00a0\u00bbinitial\u00a0\u00bb background_position=\u00a0\u00bbtop_left\u00a0\u00bb background_repeat=\u00a0\u00bbrepeat\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb3.25″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.9.2″]<\/p>\n

\u00ab Quel est le jouet pr\u00e9f\u00e9r\u00e9 de Chiara? \u00bb m\u2019a demand\u00e9 la th\u00e9rapeute de ma fille, qui avait alors un\u00a0an. \u00ab\u00a0Il sera bien utile lors de sa th\u00e9rapie.\u00a0\u00bb<\/p>\n

Contrairement \u00e0 la plupart des parents, qui pourraient facilement nommer la peluche ou le jouet favori de leur enfant, j\u2019ai d\u00fb m\u2019arr\u00eater pour r\u00e9fl\u00e9chir.<\/p>\n

\u00ab Elle n\u2019en a pas \u00bb, lui ai-je r\u00e9pondu. Chiara a beaucoup de mal \u00e0 voir les objets, donc elle peine \u00e0 interagir avec les jouets en g\u00e9n\u00e9ral.<\/p>\n

Notre petite fille, Chiara, est maintenant \u00e2g\u00e9e de deux ans et demi. Elle remplit notre quotidien de bonheur et de sourires enchanteurs. Par son temp\u00e9rament doux et attentionn\u00e9, Chiara gagne le c\u0153ur de tous ceux et celles qui la rencontrent. Elle se laisse facilement prendre dans les bras en poussant un petit rire ou en reposant sa t\u00eate doucement sur ton \u00e9paule. Bien qu\u2019elle ne parle pas, elle est capable de rire et m\u00eame de se disputer avec son p\u00e8re!<\/p>\n

\"\"<\/p>\n

Lorsque Chiara avait seulement quatre mois, nous avons constat\u00e9 que son regard \u00e9tait absent. On nous avait pourtant dit que les b\u00e9b\u00e9s naissaient avec une vue faible, mais qu\u2019ils pouvaient reconna\u00eetre le visage de leur m\u00e8re et y r\u00e9agir apr\u00e8s quelques mois. Ses muscles semblaient \u00e9galement manquer de tonus.<\/p>\n

Nous avons demand\u00e9 l\u2019avis de diff\u00e9rents sp\u00e9cialistes sur ce comportement inqui\u00e9tant. Ceux-ci ont trouv\u00e9 chez Chiara une mutation g\u00e9n\u00e9tique rare, qui aurait des r\u00e9percussions sur son d\u00e9veloppement. Nous \u00e9tions assaillis de questions : quelles seront les cons\u00e9quences pour l\u2019avenir de notre petite? Comment devronsnous prendre soin d\u2019elle? H\u00e9las, les sp\u00e9cialistes avaient peu de r\u00e9ponses \u00e0 nous offrir. Nous nous sentions parfois submerg\u00e9s par la confusion et l\u2019impuissance.<\/p>\n

Heureusement, nous avons repris espoir gr\u00e2ce au Centre MAB-Mackay.<\/p>\n

Une semaine apr\u00e8s le premier anniversaire de Chiara, nous avons d\u00e9couvert ce centre qui transformerait la vie de notre fille. Malgr\u00e9 nos inqui\u00e9tudes initiales \u2013 nous n\u2019avions jamais entendu parler du Centre MAB-Mackay et ne savions pas \u00e0 quoi nous attendre \u2013 nous avons vite rencontr\u00e9 une formidable \u00e9quipe de sp\u00e9cialistes qui ont su lib\u00e9rer le potentiel de Chiara et r\u00e9pondre \u00e0 nos questions. Apr\u00e8s des mois de lourdes \u00e9motions, nous nous sentions enfin rassur\u00e9s et compris.<\/p>\n

Les th\u00e9rapeutes ont commenc\u00e9 par aider Chiara avec sa vue. La capacit\u00e9 \u00e0 reconna\u00eetre des objets lui permettrait de tendre la main pour les attraper et, ultimement, de ramper et de marcher. L\u2019enjeu pour Chiara n\u2019\u00e9tait pas sa vue, mais le m\u00e9canisme dans son cerveau permettant de traiter les messages visuels. Gr\u00e2ce \u00e0 de nombreuses s\u00e9ances de th\u00e9rapie visuelle adapt\u00e9e, Chiara a r\u00e9ussi \u00e0 fixer, puis \u00e0 suivre des objets du regard. Elle est maintenant capable de prendre des jouets dans ses mains.<\/p>\n

Une fois cette aptitude acquise, les th\u00e9rapeutes se sont pench\u00e9s sur la motricit\u00e9, la coordination et la communication de Chiara. Chaque s\u00e9ance \u00e9tait planifi\u00e9e avec soin pour aider Chiara \u00e0 renforcer ses jambes et ses bras. Le r\u00e9sultat? Elle peut maintenant se redresser et tenir un objet par elle-m\u00eame. Comme elle ne parle pas, les th\u00e9rapeutes ont mis \u00e0 sa disposition des pictogrammes pour s\u2019exprimer et dire \u00ab oui \u00bb ou \u00ab non \u00bb. On lui a aussi pr\u00e9sent\u00e9 des jeux sur ordinateur et des applications pour tablette con\u00e7us pour exercer ses aptitudes.<\/p>\n

Et le soutien du Centre MAB-Mackay ne s\u2019arr\u00eate pas l\u00e0. Nous avons particip\u00e9 \u00e0 des s\u00e9ances de discussion en groupe avec d\u2019autres parents vivant une situation semblable. L\u2019\u00e9quipe du Centre a pris les mensurations de Chiara afin de lui pr\u00e9parer une poussette adapt\u00e9e et une planche \u00e0 station debout. De plus, Chiara a re\u00e7u des lunettes personnalis\u00e9es \u00e0 montures roses flexibles.<\/p>\n

Les soins attentionn\u00e9s de l\u2019\u00e9quipe du Centre MAB-Mackay, ainsi que la collaboration des diff\u00e9rents sp\u00e9cialistes prenant soin de Chiara, nous rendent tr\u00e8s confiants et tranquilles d\u2019esprit.<\/p>\n

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\n

Pour un parent, il est si important de savoir que son enfant re\u00e7oit les meilleurs soins et le plus grand soutien. Le MAB-Mackay a fait toute la diff\u00e9rence.<\/strong><\/p>\n<\/blockquote>\n

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Chiara pratique avec sa planche \u00e0 station debout au MAB-Mackay<\/p>\n

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Notre fille a \u00e9norm\u00e9ment progress\u00e9 dans divers aspects de son d\u00e9veloppement, et nous en sommes immens\u00e9ment fiers!<\/p>\n

Nous avons c\u00e9l\u00e9br\u00e9 sa plus grande r\u00e9ussite durant le dernier temps des F\u00eates : elle a d\u00e9velopp\u00e9 suffisamment de force dans ses jambes pour faire quelques pas ! C\u2019est un immense exploit, m\u00eame si elle y est arriv\u00e9e avec l\u2019aide de son th\u00e9rapeute ou de mon mari.<\/p>\n

Sans votre soutien, Chiara n\u2019aurait pas pu faire autant de progr\u00e8s.<\/strong><\/p>\n

M\u00eame durant la pand\u00e9mie, les th\u00e9rapeutes du Centre MAB-Mackay ont maintenu leur engagement envers Chiara. Ils et elles ont organis\u00e9 des s\u00e9ances Zoom r\u00e9guli\u00e8res durant le confinement du printemps dernier et m\u2019ont enseign\u00e9 \u2013 \u00e0 l\u2019aide d\u2019une poup\u00e9e grandeur nature \u2013 comment prendre Chiara dans mes bras de fa\u00e7on \u00e0 favoriser la mobilit\u00e9 de ses jambes. Quand elle est devenue trop grande pour sa planche \u00e0 station debout, notre physioth\u00e9rapeute nous en a amen\u00e9 un nouveau et a effectu\u00e9 les ajustements requis.<\/p>\n

Les mots manquent parfois aux parents pour exprimer leur besoin d\u2019\u00eatre rassur\u00e9s quant aux bons soins de leur enfant. Nous vous remercions pour votre g\u00e9n\u00e9rosit\u00e9, qui permet de r\u00e9ellement faire avancer les choses.<\/p>\n

Notre histoire ne se termine pas ici.<\/p>\n

Chiara a fait d\u2019incroyables progr\u00e8s et poursuit ses efforts pour atteindre son plein potentiel. Comme des mesures suppl\u00e9mentaires ont \u00e9t\u00e9 mises en place pour pr\u00e9venir la transmission de la COVID-19, nous continuons de venir au Centre pour ses th\u00e9rapies hebdomadaires. Notre fille commence \u00e0 ma\u00eetriser ses bras et \u00e0 tenir des objets d\u2019une main, puis de l\u2019autre. Elle apprend aussi \u00e0 manger \u00e0 l\u2019aide d\u2019une cuill\u00e8re.<\/p>\n

\u00c9lever un enfant vivant avec une d\u00e9ficience majeure repr\u00e9sente un grand d\u00e9fi, qui peut \u00eatre source de solitude. Gr\u00e2ce aux dons de gens comme vous, nous pouvons dormir l\u2019esprit tranquille, car le Centre MAB-Mackay sera l\u00e0 pour offrir \u00e0 Chiara la th\u00e9rapie et les outils requis pour vivre une enfance heureuse et combl\u00e9e.<\/p>\n

Lysa, fi\u00e8re maman de Chiara<\/p>\n

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