LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
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.