01/12/2014
My son's face is running a Marathon today in Disney World! So is my lifelong friend, Traci Waldheim who is raising funds for Tourette Syndrome Association in Jake's honor! I'm so glad she chose this picture as it has special memories for me. This picture was taken just months after Jake was diagnosed with Tourette at the age of 6. This pic is him unwinding on the Jersey Shore where we took a break after road tripping back from our first The National Tourette Syndrome Association, Inc. Convention in Washington DC. Looking back, I know that trip saved our lives. I remember being so angry after his diagnosis, so scared and completely unprepared for what lay ahead. I can only imagine how Jake felt. He had already been through so much having brain surgery at only 3 years for a brain tumor. This new diagnosis just kicked us when we had just picked ourselves back up again. Meeting the folks at TSA was our life line. Jake went into a camp called Tourette Syndrome Camp USA, while I attended classes and seminars to learn about Tourette Syndrome. Jake had never met anyone with Tourette Syndrome prior to this. In fact, I was told by the Principal of his school that "nobody in the history of our school has ever had Tourette". We were all flying blind and it was scary. To make a long story short, Jake LOVED that camp. Most of the campers and counselors had TS. For the first time, Jake and I felt like we weren't alone in this. I came home with bags full of information for school staff, family, friends and his doctors. That was the beginning of our "Village". If you are reading this, you are part of our Village and I want to say thank you. We love you for sharing this journey with us. Today I ask that you change your profile picture to Traci's tshirt so we can help raise awareness of Tourette Syndrome and help educate people, because with education comes understanding and love . Thank you, all