Madeleine

Madeleine.BB

Madeleine

Hallo Ich heiße Madeleine!

Ich bin 3 Jahre 4 Monate jung und lebe in Oberösterreich.

Im Jänner 2019, kurz nach meinen 3. Geburtstag, erhielt ich die schreckliche Diagnose, von zwei extrem seltenen unheilbaren neurologischen Erkrankungen. Es handelt sich um eine Spätinfantile Metachromatische Leukodystrophie und um eine Charcot Marie Tooth Neuropathie. Durch einen Enzymmangel kommt es zu schweren Schädigungen und Zerstörung meiner Nervenzellen im Gehirn und meiner peripheren Nerven. Der Verlust all meiner bisherigen erlernten Funktionen wie Krabbeln, Essen, Sehen, Hören wird die Folge sein.

Die Kombinationen meiner Erkrankungen kommen bisher weltweit in keinen Datenbanken vor, daher gibt es für mich vorerst auch leider keine Therapie, und keine Heilung. Die Krankheit führt leider zum Tod.

eure Madeleine

Eva

Eva ist die Gründerin und Vorsitzende des Vereins. Sie ist die Mama von unserem Engel Haylie welche am Tay-Sachs Syndrom litt und im April 2018 verstorben ist. Haylie war der Grund warum dieser Verein gegründet wurde und so wurde er in gewisser Weise zu ihrem Vermächtnis. Haylie war ein große Inspiration und wir werden sie nie vergessen.

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