David.BB

David

Hallo Ich bin David!

Auf dem Foto bin ich zusammen mit meinen Eltern Andrea und Alexander.

Ich war im März 13 Jahre alt.

Bereits in der Schwangerschaft erfuhren meine Eltern, dass ich einen Hydrocephalus habe, damals war meine Mama in der 17. SSW. Da es für meine Eltern klar war, dass ich trotzdem herzlich willkommen auf dieser Welt bin, entschieden sie sich gegen jegliche Untersuchungen.

In der 38. SSW wurde ich geboren und kam sofort danach auf die Intensivstation, da ich große Probleme beim Atmen hatte. Dort wurden erste Untersuchungen gemacht, der Hydrocephalus wurde bestätigt, allerdings zeigte er keine Anzeichen eines Hirndrucks, es waren dafür aber auch andere Teile des Gehirns nicht angelegt oder zu klein angelegt. Noch auf der Intensiv – im Alter von 7 Tagen bekam ich meine ersten epileptischen Anfälle, die ich bis heute nicht los geworden bin.

Mit einem Monat durfte ich nach Hause zu meinen Eltern und Geschwistern mit den Worten „David wird nie etwas lernen, er wird immer ein Pflegefall bleiben“.

Dass sich die Ärzte gewaltig geirrt haben, zeigte ich ihnen immer wieder. Es hat zwar alles sehr lange gedauert, ich habe aber dennoch ganz viel gelernt.

Mit 2 Jahren konnte ich robben, mit 3 Jahren dann endlich auch sitzen. Mit 3 Jahren mussten mir meine Eltern eine Magensonde (PEG) legen lassen, da ich zu dieser Zeit jegliche Nahrungs- und Flüssigkeitsaufnahme verweigert habe. Im Alter von 8 Jahren habe ich mich das erste Mal zum Stehen hoch gezogen.

Ich habe dann gelernt, einige Schritte mit dem Rollator zu gehen, wenn ich mich gut festhalten konnte, konnte ich auch stehen. Ich konnte auch recht geschickt mit meinem Rolli fahren.

Im Alter von 10 Jahren wurde dann eine Ursache meiner Beeinträchtigung gefunden, ich habe einen weltweit einzigartigen Gendefekt, der Knochen, Bänder, Muskeln, Bindegewebe schwächt und zunehmend verformt.

Leider habe ich aber auch eine schwere Skoliose (Wirbelsäulenverkrümmung), so dass ich mit 11 Jahren riesige Probleme mit meiner Wirbelsäule bekam.

Ich hatte ständig Schmerzen ich machte Rückschritte in der Entwicklung, das Gehen am Rollator fiel mir immer schwerer. Eigentlich sollte die Skoliose operiert werden, dazu war ich aber viel zu untergewichtig und die OP wäre lebensgefährlich gewesen, deshalb haben sich meine Eltern dagegen entschieden.

Im Juli 2018 kam ich, nach einem Notfall zuhause, mit Atemnot ins Krankenhaus, seit dem bin ich 24 Stunden am Tag auf Sauerstoffgabe angewiesen und mein Zustand hat sich seit dem sehr verschlechtert.

Ich schlafe total viel, liege fast den ganzen Tag, mir fehlt die Kraft zu krabbeln und wenn ich  mich dann doch mal zum Krabbeln aufraffe, bekomme ich ganz rasch Atemnot. Meine Eltern und ich werden vom Kinderpalliativteam Papageno aus Salzburg liebevoll betreut. Bis zum Sommer bin ich noch regelmäßig zur Schule gegangen, wie es dann ab Herbst aussehen wird, wissen wir leider noch nicht.

Danke, dass ihr meine Geschichte lest, und vielleicht wollt ihr mich und meine Familie noch ein Stück meines Weges begleiten.

Alles Liebe

David

Am 12. Juli 2019, um 2:45 Uhr, schloss unser David im Alter von 13 Jahren für immer seine Augen. Er war ein unfassbar starker Kämpfer und wir sind unendlich traurig, dass diese Welt diesen wertvollen Menschen verloren hat.

David, du lebst in unseren Herzen weiter! Für immer unvergessen.

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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