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

Added 01-22-20 09:37:02am EST - “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.” -


Posted By TheNewsCommenter: From “‘Without it we will die’: Denied expensive medication for 3yrs, Russian family fights (and wins) against rare genetic disease”. Below is an excerpt from the article.

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 grandmother,” the boy said, bending his fingers.

“I know that the medicine is expensive and we will never buy it on our own. But everyone has the right to life. Without medicine, we will die,” he added in despair.

Intended for Vladimir Putin and shared on social media, Ivan’s cry for help has become a turning point for him and his family, who spent three years fighting for a life-saving medication refused to them by their clinic. But for some of the family, it came all too late.

Like many people who test positive for deadly diseases, the seven blood relatives – whom Ivan had asked to help – learned of their diagnosis by accident.


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