Lea- Sophie

Lea.S.BB

Lea- Sophie

Hallo mein Name ist Lea Sophie!

Ich bin mittlerweile 9 Jahre alt!

3 Wochen nach meiner Geburt wurde ich ein Palliativ Kind, ich erkrankte nach meiner Geburt an einer septischen streptokokken Meningitis.

Ich wurde für 4 Wochen in ein künstliches Koma versetzt und seitdem bin ich schwerst mehrfach behindert und lebensbegrenzt erkrankt!

Auch wenn die Ärzte mir keine große Lebenserwartung zugestanden haben, kämpfe ich mit meiner Familie jeden Tag.

Durch die Meningitis wurde mein komplettes Gehirn, bis auf das Stammhirn und die Rinde des Kleinhirns, zerstört! Ich leide an einer spastischen tetraplegie, das heißt ich kann weder selbstständig sitzen oder arme und Beine bewegen! Ich kann nicht sprechen aber ab und zu etwas lautieren, ich kann nicht wirklich sehen, aber dafür höre ich !

Meinen Kopf kann ich etwas nach links und rechts drehen, ich kann nicht über den Mund essen, deshalb habe ich eine Magensonde! Ich leide an Skoliose und auch an Epilepsie! Ich habe einen Shunt, einen Port Katheter ! In den letzten Jahren wurde mein Pflegeaufwand leider immer intensiver, durch mein schlechtes Immunsystem und die fortschreitende skoliose erkranke ich immer wieder an schweren Lungenentzündungen !

Ich bin mehrmals im Jahr zu Gast auf der Intensivstation, dann meistens intubiert weil ich es oft ohne nicht mehr schaffen würde!

Letztes Jahr war ich für fast 4 Monate in der Klinik, und es gab ganz viele Momente in denen es hieß ich würde es nicht mehr schaffen, aber ich kämpfe mich irgendwie immer auch mit Hilfe von meiner Familie zurück!

Aber seit letztem Jahr kann auch meine Mama nun nicht mehr arbeiten gehen, denn ich habe mittlerweile heimbeatmung und Mama und Papa müssen und möchte stets 24 Stunden an meiner Seite sein, weil wir einfach nicht wissen wieviel Zeit und noch bleibt!

Trotz allem bin ich ein fröhliches Mädchen und bin stolz so starke Eltern zu haben!

 

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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