Month: December 2014

Juliet Perri was born on the morning of May 15, 2014, she came to us very similar to our older two children.  We had a nice drive in to the hospital, in the middle of the night, just like her siblings, she did hold on a little longer to be born as it was mid-morning.  Her newborn screen was normal except for the dots in her eyes, our pediatrician, wasn’t concerned, but thought that they did not look normal.  Fast forward a 3 weeks and they were a confirmed cataracts, however our Eye Dr. was not worried and just wanted to see us again in 2 months.

Around the 4-5 weeks of age, we noticed that Juliet didn’t seem to be gaining any weight, although she ate, or tried to eat, like any other newborn.  We got a Dr. appointment, and were admitted to the hospital for, “Failure to Thrive”, it was at this point that they did an MRI on Juliet and we learned about her, ACC (Agenesis of the Corpus Callosum).  It was at this point that our real journey began.

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.