Iskandar and Ramazan have a rare genetic disease and need a cure

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Fundación • Republic of Bashkortostan

At birth, Iskandar weighed less than one and a half kilograms, gained weight poorly, and barely digested food. At four months, his condition worsened; he stopped gaining weight altogether, developed constant diarrhea, and vomited even the smallest amounts of formula. Some time later, a second child, Ramazan, was born. He was born underweight and had the same symptoms as his older brother. Endless medical examinations and treatments failed to help the boys' parents, and doctors shrugged their shoulders. Until one day, they sent Iskandar and Ramazan for a complex genetic analysis, which revealed that the boys had trichohepatoenteric syndrome type 2—a rare genetic disorder that primarily affects the intestines. Treatment for this disease involves specialized intravenous nutrition and a large number of different medications, the most important of which is immunoglobulin. It must be taken long-term, but unfortunately, the family does not receive it for free and is forced to purchase it themselves. We are starting a fundraiser to purchase 31 packages of this medication and ask for your support for the boys.