{"id":20697,"date":"2020-09-23T14:07:56","date_gmt":"2020-09-23T12:07:56","guid":{"rendered":"https:\/\/alan.wearequattro.com\/testimonials\/testimonials-nataliia\/"},"modified":"2021-01-27T14:12:01","modified_gmt":"2021-01-27T13:12:01","slug":"temoignages-nataliia","status":"publish","type":"page","link":"https:\/\/alan.lu\/fr\/temoignages\/temoignages-nataliia\/","title":{"rendered":"T\u00e9moignages"},"content":{"rendered":"

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Nataliia<\/h2>\n

[\/vc_column_text][vc_column_text]m\u00e8re d\u2019un gar\u00e7on d\u20191 an vivant avec le syndrome d’Angelman<\/strong>[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]”Daniel est n\u00e9 en mai 2019. La grossesse \u00e9tait parfaite. J’\u00e9tais la femme la plus heureuse du monde ! Oui, pendant les premiers mois, Daniel a eu des probl\u00e8mes d’alimentation, un petit blocage dans la gorge, une t\u00eate un peu plate, du strabisme, des probl\u00e8mes de reflux. Ces probl\u00e8mes semblaient mineurs, vu que beaucoup de b\u00e9b\u00e9s peuvent \u00eatre affect\u00e9s par l\u2019un ou l\u2019autre de ces sympt\u00f4mes. Quand Daniel avait 3 mois, il a \u00e9t\u00e9 hospitalis\u00e9 pour exclure une origine neurologique et les r\u00e9sultats des tests g\u00e9n\u00e9tiques ont montr\u00e9 une microd\u00e9l\u00e9tion sur le chromosome 15, ce qui correspond au syndrome d’Angelman. Choc. Douleur. Larmes.<\/p>\n

Le syndrome d’Angelman est une maladie rare caus\u00e9e par des anomalies chromosomiques affectant environ 1 nouveau-n\u00e9 sur 15000. Les enfants ont un retard intellectuel et neurologique d\u00e8s les premi\u00e8res ann\u00e9es de leur vie. La maladie provoque aussi des convulsions, des troubles du sommeil, des rires fr\u00e9quents et une absence de langage oral. Il s’agit d’une anomalie g\u00e9n\u00e9tique et il n\u2019existe pas encore de rem\u00e8de.<\/p>\n

Je pleurais, mais je voulais aussi faire tout en mon pouvoir pour aider mon fils. Nous avons contact\u00e9 de nombreuses organisations pour le syndrome d’Angelman qui nous ont soutenus sur notre chemin ! La routine hebdomadaire de Daniel comprend de la physioth\u00e9rapie, de l’ergoth\u00e9rapie, de l’orthophonie, de la piscine, des exercices de d\u00e9veloppement de la vision et des visites d’ost\u00e9opathe. Tous les 3-4 mois, nous essayons de suivre une th\u00e9rapie intensive dans des centres de r\u00e9\u00e9ducation et nous faisons beaucoup d’exercices \u00e0 la maison. Il est extr\u00eamement rare que la maladie ait \u00e9t\u00e9 d\u00e9couverte si t\u00f4t, \u00e0 3 mois. Le diagnostic est g\u00e9n\u00e9ralement pos\u00e9 vers l’\u00e2ge d’un \u00e0 deux ans car le syndrome d’Angelman ne peut pas \u00eatre d\u00e9tect\u00e9 par des tests standard pendant la grossesse.<\/p>\n

Si vous cherchez en ligne, Daniel correspond bien \u00e0 la description des enfants vivant avec le syndrome d’Angelman. Mais ce qui n’est pas \u00e9crit en ligne, c’est que chaque enfant est diff\u00e9rent et a sa propre personnalit\u00e9. Daniel m’a appris \u00e0 appr\u00e9cier les choses simples, que nous tenons parfois pour acquises.<\/p>\n

Aujourd’hui, nous sommes pleins d’espoir, car les scientifiques sont sur le point de commencer les premiers essais cliniques pour le traitement de la cause du syndrome d’Angelman. J\u2019esp\u00e8re que la nouvelle th\u00e9rapie pourra am\u00e9liorer la sant\u00e9 et les capacit\u00e9s d’apprentissage de Daniel. Il pourra alors aller \u00e0 une \u00e9cole ordinaire et je ne serai m\u00eame pas f\u00e2ch\u00e9e s\u2019il obtient de mauvaises notes. Il aura des amis et de l’amour. Une enfance ordinaire.”
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Contactez-nous en cas de questions ou besoin d\u2019assistance<\/span><\/h2>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\n\t\t\t\t\t\t\t\t\t
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