I wait for the Kanuma treatment for more than 6 month in Hungary

Hello Everyone,

My name is Edina from Hungary. I have a 6 years old son, and he is LAL-D. We didn't start yet get Kanuma, because we wait 6 months ago for a government accept the treatment. My son is the FIRST in my country!! Can somebody know if my country not accept, where i can ask for help? That correct, he have to start as soon as possible? What can i do? My son stomach really get bigger, which mean bigger his liver and his spleen. 

Thank you all your answer.

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