Children from the Northern Russian Republic of Chuvash, who have the rare and fatal “marble bone disease” called osteopetrosis, are coming to Israel to be healed in the Hadassah Medical Center’s Pediatric Hematology Department.
A genetic disease that afflicts children, osteopetrosis results when the normal bodily process of building new bones and gradually tearing down old ones is faulty and the bones, rather than being porous, turn solid, like marble. In Chuvash, one of every 4,000 newborns is reportedly born with this condition.
“The doctors at home were able to diagnose the disease when he was a toddler,” relates Svetlana Izozsimova about her grandson, Kirill. “But there was no treatment. They told us Kirill would die, regretfully a terrible death.”
Read about how Svetlana found Hadassah, Kirill’s life-saving treatment at the hands of Bone Marrow Transplant expert Dr. Polina Stepensky, and the other 14 children who made the pilgrimage to Hadassah’s specialist for a new lease on life.