Lorsqu’une mère est confrontée à une infortune que subit son chérubin, c’est son cœur qui la pousse à protéger son petit amour et à trouver les moyens de la surpasser.
Maitre Rania Sfeir Makhoul, a vécu une terrible épreuve à sa première grossesse; l’éternel Créateur voulait qu’elle supporte ce qu’il voyait en son pouvoir.
Son premier bébé, Sylvio, un bambin exceptionnel, un cadeau extraordinaire du ciel, est autiste, un mot terrible pour certains.
Au début, la vigilante mère remarqua que son fils ne jouait pas comme les autres petits, elle consulta un spécialiste qui diagnostiqua l’enfant d’insociable.
Alors, elle décida de quitter son travail, pourtant avocate à succès, et de consacrer son temps à s’en occuper ; elle passait sa journée entre playgrouds, mall et restos, mais rien n’a changé, bien au contraire, la situation a empiré : plus de contact visuel, ne parlait toujours pas et ne jouait pas. Une seule chose l’intéressait et le fascinait : les lampes et leur jeu de lumière. Alors la mère se tourna de nouveau vers les médecins, d’autant plus que Sylvio était son premier-né et qu’elle manquait d’expérience. Malheureusement, il a fallu beaucoup de temps, presque deux ans, avant que le diagnostic correct de l’état du petit Sylvio soit établi, ce qui a eu un impact négatif sur son état et celui de sa mère, qui a risqué une fausse couche lorsqu’elle a appris la nouvelle. Toutefois, son devoir maternel l’a poussée à surmonter le choc au plus vite. Oubliant ses douleurs psychologiques et physiques, elle eut recours, une fois de plus aux spécialistes (orthophonistes, psychomotriciennes…). Cependant le plus gros problème résidait dans la méconnaissance de la question de l’autisme ; dans la plupart des centres soi-disant spécialisés, les responsables et les formateurs manquaient d’expérience, de sorte que certains centres semblaient recourir à l’emploi de spécialistes en éducation générale au lieu d’embaucher des spécialistes de l’autisme, car l’autisme est une aura particulière et non un commun handicap mental. De plus, chaque autiste est un cas en soi.
Côté loi, même l’État libanais a accordé aux handicapés physiques et mentaux une carte d’invalidité qui couvre tous les cas. De plus, cette loi sur les personnes handicapées qui a été approuvée en 2000, doit être réformée. Toute cette situation a incité la dévouée mère à fonder une société pour les autistes, VIO.
Au début, maitre Rania a travaillé avec les membres de l’association sur un projet de loi ; ils ont donc ajouté un article au projet de base datant de l’an 2000, et cet article visait surtout l’exonération d’impôts, qui touche non seulement l’autiste, mais sa famille, dans le but de les aider à économiser les frais des soins car, à la suite de la crise économique qui bat son plein, l’Etat était devenu incapable de prendre en charge même partiellement ces frais. Ce projet de loi a été présenté au parlement par son excellence, monsieur Georges Edwan et en attente de sa discussion au parlement.
D’autre part, l’association VIO a pris contact avec le secteur privé à travers divers syndicats pour obtenir un rabais sur de nombreux services médicaux et de consommation (médecine générale, ophtalmologie ou dentisterie…).
Pour soutenir les familles nécessiteuses, VIO a créé une boutique en ligne où bijoux conçus spécialement par Christian Bonja, ainsi qu’une unique collection de vêtements et d’accessoires, créée par plus de 20 designers de renom étaient vendus. Dans ce contexte, des expositions ont eu lieu à Faqra et Mzar, auxquelles ont été invitées de nombreuses personnalités sociales dans un but informatif et, en même temps, lucratif pour financer les objectifs de l’association.
La troisième phase des projets de l’association a consisté à construire un centre résidentiel pour héberger les autistes âgés, devenus orphelins et seuls à cause de la mort de leurs parents. Alors, VIO a pris contact avec le diocèse des Maronites à Beyrouth qui a fait don de 6 000 mètres carrés pour l’accomplissement du projet qui comprend un Centre d’éducation et de réhabilitation, un bâtiment résidentielle, un autre pour les activités artistiques, sensorielles et sportive, une piscine. Vu que, la réalisation du projet coûte 3 millions de dollars, maitre Rania a dû contacter l’ALBA qui s’est présentée bénévole pour l’exécution de l’avant-projet en 3D. Une fois terminé, un documentaire sur le projet et les objectifs de l’association sera effectué dans le but de sensibiliser le public et de sponsoriser la réalisation de projet.
Rania avoue que, dans ces circonstances, accomplir un projet pareil est vraiment la mer à boire, cependant, elle ne baisse pas les bras, prend son courage en main, armée par sa confiance en Dieu et son grand amour pour son petit Sylvio ou VIO comme elle aime à l’appeler.
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