April 2, 2012
Dear Family and Friends:
Lola just turned six and recently had her 7th laser surgery. She is in kindergarten, learning how to read and loves it. Her seizure activity has increased the past few months with each one being different. They are scary as some are subtle, her eyes fixated and her speech slow, while others do not allow her the ability to walk. We are fortunate that she has her own aide at school who keeps a close eye on her and for her teacher and the administration that have been extremely helpful in trying to understand Sturge-Weber Syndrome. She’s been to Children’s Hospital more times than we would have hoped, but we are so grateful for the quick response of the paramedic team and hospital staff that cares for her.
This past summer we attended our first Sturge-Weber Syndrome Conference put together by the Sturge-Weber Foundation. It was held in Orlando, Florida and we had the pleasure of meeting approximately 25 families from all over the World who share our same fears, concerns and hopes. It was heartwarming as they shared their stories, each one different, yet all with the same understanding of finding as much information and answers they so desperately need. As I listened to Amanda speak to the other moms, I looked at her with amazement as I admire her courage, knowledge and persistence in regard to Lola’s care. Although she suffers in her own silence, she is Lola’s biggest advocate through it all.
What these families endure, each one unique overwhelmed us. But through their laughter and their many tears we were brought together with an understanding of how lucky we were to have had the opportunity to meet and that just knowing someone who could relate made all the difference.
So to you, my family and friends, I want to say “Thank You” for your continued support with your generous donation to help Lola and others like her who is affected by Sturge-Weber Syndrome. As you know, all donations are dedicated to the research that is being done by Dr. Anne Comi, Kennedy Krieger Institute, and her tireless dedication, persistence and love for finding a cure for Sturge-Weber Syndrome. Her continued guidance, valuable time and comfort to Amanda in her deepest most trying times are beyond measure.
Again, you have our heartfelt gratitude as we strive to make a difference in the lives of those affected by Sturge-Weber Syndrome.
Mitch and Jeanette Ribak