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.
What is 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 six months of age and eight years. (cont. on Vici Syndrome page.)
There is very little known about VS. In 1988 it 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 prevention or interventions. One research group in the U.K. has recently participated in extensive research about VS and their findings will be be published in the near future.
Who is Lila?
Born in July of 2010, Lila Patricia Kimball is the fiftieth documented person in the world to be found with Vici Syndrome. Her parents, Quinn and Kristi Kimball, started having concerns about her health and abilities at two months of age. A grueling twelve months later Lila was finally diagnosed with VS. (cont. on About Lila page)
Although, diagnosing Lila was a blessing of it's own kind, learning of the long-term affects of VS has been devastating. Our first efforts through Lifting Lila is to collect donations for Lila Kimball and her family as they fight this battle with VS.
To hear about the Kimball's experience with VS thus far, watch the video below.
Why the yellow tulip?
While looking at gardens with her family one day one patch in particular caught Kristi's Kimball's eye. It was a garden of only her favorite flower, pink tulips, with the exception of one in the middle of the bunch: one single yellow tulip. She compared the yellow tulip among the pink to her little Lila. Her condition was unexpected, she is different, but particularly special and beautiful as she lives among the rest.