Team Ultra Violet

Violet was born a seemingly healthy baby girl on Aug 14, 2012.  At 6 months she was diagnosed  with Lissencephaly.  Lissencephaly, which literally means "smooth brain," is a rare, gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex.  The prognosis of a baby born with this gene deletion is not hopeful.  The literature told us that her body would continue to grow and her brain development would not continue past a 3 to 5 month level.  

       However, today our endearing, brilliant and beautiful girl is doing miraculous things.  She communicates verbally and with a Tobii Dynavox communication device. Nonetheless, it has been a journey that has put our family in an impossible financial position.  As a result of the Lissencephaly diagnosis, Violet has 17 ongoing health issues/diagnoses and takes an average of 12 prescribed medications daily.  She receives multiple therapies and has numerous medical appointments and hospital stays at Children's Hospital of Philadelphia.

       There have been countless people in our lives that have expressed that they wish that there was something they could do to help.  I typically simply ask them to pray.  The “Team Ultra Violet” Fundraising Campaign will give those who want to do more, the ability to do so.  Whether it is your positive thoughts, prayers or monetary donation you are now a welcome part of a growing group of people who believe in the beautiful and strong spirit of our sweet Violet. Welcome to Team Ultra Violet.

-Elizabeth Pantucci