Welcome to Lifting Lila,

a blog dedicated to helping families affected by Vici Syndrome while increasing awareness of the extraordinarily rare and newly discovered disorder.


Vici Syndrome

Vici Syndrome (VS) is an extremely rare multi-system disorder characterized by an absence of corpus callosum (part of the brain), low muscle tone, significant developmental delays, cataracts, heart muscle disease, abnormalities of the immune system, seizures,recurrent severe infections and in some cases loss of hearing. Life excpectancy for children with VS varies between ages three through eight.

 Individuals born with the disorder inherited two copies of a defective gene present on the same autosome, one from each parent. However, parents do not experience the signs and symptoms of the disorder. Because the defective gene is present in both parents it is very likely for parents to have more than one child with Vicci Syndrome.

In 1988 Vici Syndrome was first reported by Italian doctor, Carlo Dionisi-Vici in an article he wrote about two brothers with a previously unidentified disorder.
Since then little research has been done about preventions and interventions of VS.   Much is to be learned about this newly found disorder. One research group in the U.K. is currently participating in an extensive research about VS and their findings will be published in the near future.  To date, only fifty children throughout the world have been diagnosed with the disorder, Lila Kimball being the most recent.