‘Without it we will die’: Denied expensive medication for 3yrs, Russian family fights (and wins) against rare genetic disease ...News

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‘Without it we will die’: Denied expensive medication for 3yrs, Russian family fights (and wins) against rare genetic disease
Diagnosed with a genetic disease that slowly eats away vital organs, and brushed aside by health bureaucrats, a family in Nizhny Novgorod have fought to obtain a crucial but expensive drug – a battle they are now winning. As millions of children across Russia prepared to open their Christmas presents, 12-year-old Ivan Lobanov, a resident of a small hamlet near Nizhny Novgorod, turned the camera on and began to speak, his voice calm and lips stiff. “I have a serious disease, the Fabry disease. I inherited it,” the pale, intelligent-looking boy is heard to say in the video. “My mother is sick, my cousins are sick, [as are] my uncle and g

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