Fynn
Hallo ich bin Fynn!
Ich lebe mit dem Charge Syndrom!
Vor 4 Jahren hatte ich einen sehr schweren Start ins Leben, jedoch habe ich mich durchgekämpft.
Ich bin kein Palliativ Kind, jedoch laufe ich aufgrund meines nicht korrigierbaren Herzfehlers unter lebensbedrohliche Erkrankung.
In meinem bisher kurzen Leben musste ich schon viele lebensnotwendige Operationen über mich ergehen lassen. Darunter sind 8 Herz Operationen und 2 Nasen Operationen.
Die ersten 6 Monate waren wir stationär in Linz, oft Stand es nicht sehr gut um mich. 
Charge Syndrom ist ein spontan auftretender Gendefekt am CHD7 Gen.
Was gehört da alles dazu?
RVPA conduit insuffizienz mit Ebstein anomalie, valvuläre pulmonalstenose, trikuspidalklappen insuffizienz, PFO mit rechts links shunt, Double Outlet right ventricle,
Beidseitige Choanalatresie, links blind und taub, schwere gedeihstörung, retadiertes längenwachstum, Anomalien an den Ohren, Fehlstellung der Daumen, Taktil hoch sensibel, Störung der tiefenwahrnehmung, vermindertes Schmerzempfinden, Wahrnehmungsstörung, ernährt über eine Nasale Magensonde, muskulär hochgradig hypoton.
Wir wissen nicht was noch alles auf uns zukommen wird, aber gemeinsam mit meiner Familie werde ich jede Hürde meistern!
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Очередная презентация от фирмы Эпл произошла14 сентября и
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The data is very fascinating.
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В Блэк Фрайдейв Городе-герое
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