Labrune Syndrome (LCC)

The story of Lexi

David was diagnosed at 2 years old with Labrune syndrome. It’s an extremely rare disorder characterized by a radiological triad of leukoencephalopathy, cerebral calcifications, and cysts. The condition is the result of an autosomal mutation in the SNORD118 gene. Labrune Syndrome or LCC is so rare there are only about 100 reported cases & only 2 doctors world wild researching it. One research team is located in the Washington D.C area & the other is located in Edinburgh, Scotland UK.