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Au cours des huit derniers mois, notre princesse a empiré beaucoup, en passant plusieurs semaines aux soins palliatifs intensif (injections de différents médicaments, etc) et en exigeant de plus en plus une présence continue (24-24h) pour ses besoins différents.(Toute celà se passe chez nous).
Papa Stefano, grand partie du temps était ici avec nous pour nous aider, mais après la fin du congé de compassion et après ces fêtes qui se terminent le lundi devra retourner au travail.
Ces dons lui permettent d'être en mesure de rester quelques jours de plus à la maison avec nous, donnant ainsi le répit de nuit à maman Valentina,!
Aidez-nous à lui offrir une meilleure qualité de vie!! Merci
Desirée Marcone è nata il 10 luglio 2010. Il 19 agosto 2011, è stata diagnosticata per la malattia di Tay-Sachs, una malattia neurodegenerativa molto rara, incurabile e fatale. Oggi, lei ha 3 anni. In questi ultimi otto mesi la nostra principessa é peggiorata molto, trascorrendo molte settimane alle cure palliative intensive( punture di diversi farmaci etc) e chiedendo sempre piu una presenza continua (24h su 24h) per diversi bisogni.( TUTTO QUESTO AVVIENE IN CASA)
Papà Stefano, grand parte del tempo é stato qui con noi a sostenerci, ma dopo aver terminato il congedo di compassione e dopo queste vacanze che termineranno lunedi ritornerà a lavoro.
Queste donazioni gli permetteranno di poter restare qualche giornata in piu a casa con noi, donando cosi il cambio di notte a mamma Valentina, che mentre papà lavora farà sei notti continue!!!
Aiutateci offrire a Desirée una qualità di vita migliore!!! Grazie.
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