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{"id":68770,"date":"2017-01-03T09:37:02","date_gmt":"2017-01-03T08:37:02","guid":{"rendered":"https:\/\/vosgesinfo.fr\/epinalinfo\/2017\/01\/concert-sauver-ayden-atteint-dune-maladie-rare\/"},"modified":"2017-01-03T09:37:02","modified_gmt":"2017-01-03T08:37:02","slug":"concert-sauver-ayden-atteint-dune-maladie-rare","status":"publish","type":"post","link":"https:\/\/vi.si-developpement.fr\/epinalinfo\/2017\/01\/concert-sauver-ayden-atteint-dune-maladie-rare\/","title":{"rendered":"Un concert pour sauver Ayden atteint d\u2019une maladie rare"},"content":{"rendered":"
\"(photographie<\/a>

(photographie FB Lueur d’espoir pour Ayden)<\/p><\/div>\n

Ayden souffre de la maladie de Krabbe, une maladie de la famille des leucodystrophies qui s\u2019attaque au syst\u00e8me nerveux. Les enfants atteints de cette maladie ont une esp\u00e9rance de vie limit\u00e9e. Un concert aura lieu \u00e0 Epinal pour r\u00e9colter des fonds.\u00a0<\/strong><\/h4>\n

Le samedi 21 janvier un concert aura lieu aux Moulins Bleus \u00e0 Epinal. Morgane, une jeune chanteuse de 16 ans va se produire dans le restaurant spinalien pour sauver Ayden, un petit gar\u00e7on \u00e2g\u00e9 de 2 ans. Atteint de la maladie de Krabbe (une leucodystrophie), il a besoin d\u2019une greffe aux Etats-Unis. L’esp\u00e9rance de vie annonc\u00e9e par la m\u00e9decine est d’environs 3 ans.<\/p>\n

Ayden \u00e9tait en parfaite sant\u00e9 jusqu\u2019\u00e0 l\u2019\u00e2ge de 8 mois, depuis sa maladie le prive de toutes ses facult\u00e9s motrices. Cette maladie est tr\u00e8s rare. Les parents\u00a0ont d\u00e9cid\u00e9 de se battre et de cr\u00e9er une page Facebook au nom de leur association \u00ab\u00a0Lueur d\u2019espoir pour Ayden\u00a0\u00bb. Elle a d\u00e9j\u00e0 \u00e9t\u00e9 lik\u00e9e par plus de 106\u00a0000 personnes.<\/p>\n

Les parents ont aussi d\u00e9nich\u00e9 un essai clinique pour les b\u00e9b\u00e9s et les enfants dans une clinique aux Etats-Unis. Ayden pourrait rencontrer l\u2019\u00e9quipe aux USA durant le premier trimestre 2017 \u00e0 condition de trouver les fonds. Le petit gar\u00e7on comme onze autres enfants porteurs de la maladie doit subir une greffe. Le co\u00fbt de l\u2019op\u00e9ration est de pr\u00e8s de 950\u00a0000 euros. \u00a0Un concert aura donc lieu le samedi 21 janvier \u00e0 21h au restaurant Les Moulins Bleus \u00e0 Epinal et une cagnotte a \u00e9t\u00e9 cr\u00e9\u00e9e sur Helloasso<\/a>.<\/p>\n

L\u2019argent r\u00e9colt\u00e9 \u00e0 l\u2019occasion du concert servira \u00e0 financer la greffe.<\/p>\n

C.K.N.<\/p>\n

\"15871557_620400274813240_2663519140166110333_n\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Ayden souffre de la maladie de Krabbe, une maladie de la famille des leucodystrophies qui s\u2019attaque au syst\u00e8me nerveux. 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