What are your reasons for wanting to run the London Marathon for Tourettes Action?

My son, Colby Chittenden, was first diagnosed with Tourrette Syndrome in December of 2021 at age 9. But the road that led us to that diagnosis was bumpy at best. School was suffering, he was consistently being painted as a “bad kid” who made noises, was defiant, didn’t follow the rules and didn’t interact with kids in a “normal” way. I started to notice he was special as soon as he could speak. His natural intelligence is off the charts and I know he was beyond typical. I started to notice the repetitive movements as early as age 4 but didn’t really start to look into it seriously until I was getting calls from school minimum daily but often several times a day with them complaining about his behavior.

It was breaking my heart to see him suffer and as parents we felt like we were failing him. I didn’t know where to turn, his pediatrician didn’t really understand it either but referred us to a neurologist. After an initial evaluation he was referred to a Tourette specialist and from the first meeting with her I finally felt like some one understood our child. Colby was diagnosed with OCD, ADHD, anxiety and with the motor and vocal tics the overall diagnosis was for Tourette Syndrome. While a label was “nice” and hearing from someone who finally understood helped us tremendously, he continued to suffer in school. We tried medications, we tried counseling but the school just seemed to want him “fixed”. Instead we decided to advocate for our son and lean into any available Tourette Syndrome resource we could find to help people understand our neurodiverse son. Through the Tourette Action association, I found many helpful visuals and infographics that I could use to show the teachers what was going on and how to best interact with Colby. We found a book that he could read to his class for the last 2 years to help them understand what is going on. I think he is the bravest person I ever met for standing up in front of the class and reading this to them and helping them learn diversity and tolerance for differences. We have been on a journey now and the tics come and go but he is leaning into being his best self as he is and not becoming someone he isn’t. I want nothing more than for him to embrace who he is and help others see that what makes him amazing is his uniqueness.

In 2022 about 18 months after his initial diagnosis we ran a 5K for Tourette Syndrome and he lit up and loved it. We both love running and doing it to support an amazing cause such as Tourette Syndrome is a gift I simply cannot put into words. Through awareness and advocacy we can make huge strides for those who have Tourette’s. I am truly honored to run the London Marathon for Tourette Syndrome! 

TEAM COLBY!