December 2019
Dear Friends and Families,
My son Kim came to us when he was 6 years old. It was a joy to add Kim to our family – each day was a new adventure seeing him grow. He was an excellent student, polite, a good athlete, energetic and caring. His nickname was “Bird” because throughout the day he would chirp, clear his throat and chirp again. An adorable, endearing habit, until the night we went to the emergency room when he was 8 because something was stuck in his throat. Unbeknownst to him, and to us, he had been clearing his throat hundreds of times a day so it was irritated and badly swollen and he could not swallow.
The movements began by age 10 – head jerking, shoulder shrugging, touching, counting, symmetry. Doctors called it a nervous habit, separation anxiety because he was adopted, the stress of being an over-achiever, and the list went on. We went to pediatricians, internists, psychologists, psychiatrists, allergists and eye doctors seeking answers to his ever changing symptoms.
Despite his tics, Kim prided himself on being an outstanding student and athlete. However, by his second year of high school, as his tics mounted, he lost interest in the daily activities he loved. He refused to see any more doctors. His movements became so severe that at times he could not walk across a room without steadying himself by holding on to the furniture and the walls. So he preferred to stay in bed – for him that was the only relief he got from his violent body movements. His grades went down, friends stopped calling, relatives stopped asking, and we were in our own little state of limbo not knowing what to do.
It took years, but Kim’s diagnosis finally came from a neurologist when he was 16 years old. We were so glad to finally put a name to it and get help for this disorder which was stealing all our lives. The doctor said that it was Tourette Syndrome, but that no one knows the course it will take or what causes it. If I wanted to learn more, I should go to the library AND we didn’t have to come back, because there were no treatments other than antipsychotic meds, which were dangerous and might not help anyway. I’m not sure how we made it home that evening, but I do know that it was a long, tearful ride.
I took a leave from my job to care for my son and line up resources, but quickly found there were none –few doctors, no family support, no services or network that we could tap into. I called out of state and received little response or guidance. So we tried medication after medication with no positive results. Kim’s tics eventually subsided enough for him to go off to college and he muscled his way through the first three years until his tics returned with a vengeance. He dropped out of school and took jobs where he would not be seen — a night watchman in a warehouse, a night maintenance man. Then one day he said, “I can’t let this thing get me – please help me try harder.” He began taking online courses to finish his degree and we were in awe of his determination and strength. We realized that we, too, needed to do something to bring about change and make life better any way we could.
So we put an ad in the newspaper inviting people whose lives had been touched by TS to come to RWJ Hospital on a Sunday afternoon. To my amazement 80 people showed up and for the first time our family was not alone. We talked, we cried, we exchanged ideas – we all bonded very quickly because we all had similar needs. I left the meeting with a handful of dedicated volunteers and a determination to bring services to families living with this devastating disorder.
I began to gather bottles of meds Kim had been given through the years, scripts that went unfilled, calendars showing doctors’ visits, and mileage that showed our efforts. I put them in a big plastic bag and dragged the bag with me to meetings advocating with legislators to create awareness of this underserved population. And in most cases they listened.
That advocacy was the start of a very long journey to obtain funding from the state of New Jersey in 2004 to establish the nation’s first Center of Excellence for Tourette Syndrome.
NJCTS is celebrating our fifteenth anniversary of excellence in bringing support, services and groundbreaking research to the TS community. Over the next months we will share with you faces, names, accomplishments and stories that have led NJCTS to become a model, not just for the Tourette Syndrome community, but for other disorders as well.
It has been an honor to make a difference in so many lives and I ask you to please consider a generous donation to NJCTS to help us continue to change lives and change minds.
With my sincere gratitude,
Faith W. Rice
NJCTS Founder and Executive Director
PS: Kim’s tics have persisted into adulthood and each day brings significant challenges. He takes pride in knowing he’s been part of a very successful effort to make a difference in the lives of kids and families living with Tourette Syndrome everywhere. And yes, I still have that bag of meds in my office as a reminder that there is still so much yet to be done.