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.


Lila's Story

her story
by Kristi Kimball

I have to admit I really wanted a girl, a sweet little thing to dress in pink and sparkle and revel in all things girl.  I was beyond thrilled when the ultrasound tech confirmed my suspicions. I was going to have my Lila. I knew her name long before she ever started to grow inside me. They said she was perfect in every way, perfectly normal.
When Lila was born she came with white hair and black, long eyelashes.  She looked like the most perfect angel; she was the most beautiful thing I had ever seen. She was whisked away to the NICU due to some complications during delivery but was promised that she would return soon. That was the first expectation that would go unfulfilled. It wouldn’t be the last by a mile.
At Lila’s two-month appointment her pediatrician became concerned that she wasn’t reaching milestones. She scheduled a consultation with a neurologist.  He in turn sent us to an ophthalmologist, where they discovered cataracts in both of Lila’s eyes. As devastating as this was we thought that it was fixable and explained why Lila was behind. 
After surgery the days ticked by. Month after month our hopes of having a healthy baby were dashed. Every week was more devastating than the last. I felt as if we were slipping into a dark abyss, where no one could reach us, help or even understand what we were going through.
Finally being diagnosed with Vici syndrome was both a relief and earth shattering. It was finally an end to empty promises and hopes of a recovery, but it was a death sentence. My gorgeous, sweet and patient child would leave me. She would never wear tutus at teatime, cover my walls in crayon, have a best friend, or be giddy over a first kiss; she would never put on a wedding dress or look at me and call me mom. The years of dreaming of my daughter and all of the expectations I had would never be realized.     
Every day I struggle with how to live with this intense pain. Every day I wonder how I can ever live without her. But the point is that she is here with me now. She smiles at me when I talk to her and laughs when we spin in circles. She will have intense “conversations” with her family where she will babble back and forth continuously. She has taught me to live life to the fullest, to not take a single smile or day for granted and to be thankful for what you have. She is my biggest accomplishment and my greatest teacher. She is trying to refine me into a better person.
During this journey we have tried to stay positive to look for the silver lining. One of the greatest things to come out of this tragedy is the amazing and wonderful people who have offered to help and give us words of encouragement.  Lifting Lila has come from two of those sweet people. It has given us a purpose and a source of healing. We don’t ever want parents to feel alone or hopeless again. Being able to help other families and invest in the future of affected children is helping us pick up the pieces of our shattered hearts.
Even though it’s called Lifting Lila it is Lila who is lifting us every day, making us better people, showing us patiently what this life is all about. All of these sweet angel babies, struggling with various diseases are showing us just how amazing life can be.