About Lily

We have created this blog in order to update family and friends, to help raise awareness of tuberous sclerosis, and to share with others what it is like to have a special needs child.  Please share with us your stories and experiences; we want to hear from you! Here is our story: Lily was born 7 weeks prematurely, so after 5 weeks in the Neonatal Intensive Care Unit we thought we were home free and could resume our normal life.  But at 4 months old, lying next to me on the couch, her eyes rolled back and her tiny body began to shake.  This was the pivotal moment that would change our lives forever in so many ways.  Not long after, Lily was diagnosed with tuberous sclerosis.  As an infant, Lily had hundreds of seizures a day cause by a few of her over 30 brain tumors. Now, at the age of 3 she has a SEGA, a dangerous brain tumor growing in her ventricle.  She is on a medication that we are hoping will shrink the tumors and hopefully prevent surgery, but lowers her immune system and has its own side effects.  Lily has faced many other medical hurdles as well, a hole in her heart (now closed), urinary reflux (corrected by surgery), hernia (surgical correction), kidney stones, 3 sets of ear tubes, and is often ill.  She’s our darling, little medically fragile girl, but her spirit is not fragile.  Even though Lily is developmentally delayed and she cannot yet walk, talk, or feed herself, and through all of the daily seizures, blood draws, MRI, surgeries, therapies, ambulance rides, hospital stays and endless medications, Lily is a happy girl that laughs more than any child I’ve ever seen. She sparkles with vitality and has brought us so many new experiences and our life with her is a constant adventure.  We will not let this disease stop us from providing her with a fulfilling and joyful life.  We believe Lily will learn to walk and talk, and we will never give up fighting against this disease.  So we welcome you to our blog, please join us as we take you on the adventure that can only be described as Being Lily.