' Without it, we shall die, ' the Russian families struggle against rare genetic disorder for 3 years with expensive medication refused.

A family in Nizhny Novgorod, diagnosed with a genetic disease that slowly eats vital organs and burned off by health officers, has the struggle to obtain an essential, yet costly medicine, a battle that is now being won.

While millions of children across Russia were preparing to open their Christmas presents, Ivan Lobanov, a 12-year old who lives in a small hamlet near Nizhny Novgorod, turned on the camera and began speaking, his voi....