Metimalonsav proprionil acidaemia

Kislányom problémamentes terhesség után született meg.Egy honapos korában aluszékonyság étvágytalanság,egy majd négy végtagra kiterjedö tremorja kezdödött.Korházbol korházba kerültünk de szerencsére olyan helyre kerültünk ahol nagyon jo felszereltség mellett kitünö tudásu orvosok vannak akik vissza adták a kis Nikink ÉLETÉT!A méreganyag elöntötte a szervezetét amitöl komában volt.Nagyon sokat imádkoztunk Érte és most itt van velünk!Sajnos akorához képest el van maradva de gyogypedagogushoz gyogytornára uszni hordjuk.Reggel délben és este is gyogyszereket kap.Ez mellett speciális tápszere van Angliábol.Enni szájon keresztül nem igazán eszik(pedig rendesen evett mindig)igy tápszondán tápláljuk.Soxor iszonyatosan nehéz rengeteg türelemre van szükség és szeretetre de Megéri!!!!!

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