The Diagnosis : Vici Syndrome

On December 11, Juliet was officially diagnosed with 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 expectancy for children with VS varies between ages three through eight.” – liftinglila.org

Doctor’s at Childrens are not familiar with the disease due to it’s rarity, but are in full research mode.

This is the information in our hands at this moments, more background from the day Juliet was born until present will eventually be making it’s way to the blog.