Christine Brykowych recalled the day her daughter, Alexandra, was diagnosed with Tourette
Syndrome with relief in her voice. She describes initially bringing Alexandra to a pediatrician and an opthamologist, only to receive multiple misdiagnoses. “We just needed to figure it out,” Christine stressed. After one of Alexandra’s doctors advised that she have a neurological assessment, she was shortly diagnosed with Tourette’s and was given a second definitive diagnosis three and a half years ago.
Tourette Syndrome is a neurological disorder identified by involuntary tics and vocalizations. In Alexandra’s case, her tics have caused her to make a screeching sound every other second. Due to her vocalization, Alexandra’s ribcage collapsed, causing breathing issues that led the family to seek help from a physical therapist.
The period of unknowing was difficult for both Alexandra and her family, but they were relieved to finally get a diagnosis. “We were so happy to have a name to what was affecting Alexandra,” Christine said. Alexandra then researched the Tourette Association in order for her to find ways to navigate her new normal.
However, people were unkind to Alexandra. “There was a time when Alexandra was vocalizing every second and she was afraid to leave the house because she was tired of explaining herself,” Christine said. Alexandra was bullied by random strangers, as well as adults, who called her upsetting names and failed to understand her disorder.
As a result, Alexandra knew that the way people regard those with Tourette Syndrome needed to change. One day, when Christine and Alexandra were traveling back from an aunt’s house, Alexandra commented about how beautiful the Cuomo Bridge looked. Knowing that LED lights were put into the bridge that could change its color, Alexandra wondered if they could change the lights to teal, the color that symbolizes Tourette Awareness.
“The worst they can say is no,” Christine said, encouraging her daughter to reach out to whomever could help make this possible. Throughout the next few weeks, Alexandra began drafting an email and Greenburgh Town Supervisor Paul Feiner responded immediately. From there, Alexandra was invited to speak before the Town Board.
“I’m highly impressed with Alex; She is smart and made a very effective presentation before the Town Board. I learned a lot about Tourette’s as a result of my interactions with her, and I am impressed with her persistence and hard work,” Feiner said.
Shortly after the Town Board meeting, the Historic Hudson was having an event where senators would be speaking. Alexandra attended the event, as it was a wonderful opportunity for her to share her idea with them. Senator Shelley Mayer met with Alexandra and listened to everything she had to say, providing much support. Additionally, two instrumental politicians were Senate Majority Leader Stewart-Cousins and Westchester County Executive George Latimer. With their support and interest in the Tourette Association Chapter, Alexandra’s vision was made a reality. “From there, Alexandra’s dream took on a life of its own, and I am thankful to the Historic Hudson for putting on this event with the senators,” Christine said.
Finally, June 15th arrived—the day of the bridge lighting. According to Christine, over fifty people were able to attend for the viewing. “There was much excitement in the air because most of the kids were empowered by the fact that a fifteen-year-old was able to do this,” said Christine.
Though the bridge lighting was certainly Alexandra’s dream, “This was a team effort to empower young kids to be able to go out in the real world and explain what they are dealing with and ask for social acceptance,” Christine stressed as she shared her gratitude to Governor Cuomo as well as to the army of people it took to make this feat possible. “Nobody turned her away, no one was rude to her, and the fact that not one politician brushed her off gave kids the opportunity to dream and dream big,” remarked Christine.
It is clear that this is just the beginning for fifteen-year-old Alexandra—an amazing and inspiring person who has begun to normalize Tourette’s in a society where bullying is directed at individuals who are perceived as different. Through Alexandra’s accomplishment, there is greater hope and movement towards social acceptance that will only continue to spread.
Dear Alexandra, I’m so very proud of you and your accomplishments !! your adopted Dido
Congratulations to Alexandra for overcoming her challenging condition. And, not only has she won in her personal struggle, she has become a spokesman for others with the same difficulties. Best wishes for further victories, Alexandra!
Your insightful article underscores the saying “If you can imagine it, it can be done”. The new Cuomo Bridge looked beautiful in teal at night and it all started with a whistful wish born out of adversity. From now on we can all think of Alexandra Brykowytch Cuttler as “The Girl Who Lit Up the Bridge for Tourette”. Kudos, Alexandra! And thank you to Governor Cuomo and the numerous people who supported her in raising the awareness of TS. Will it be the Emire State Building as well in TEAL next year?
The River Journal’s well written article not only helped to educate people about TS , but presented the story of Alexandra and her family in a realistic and at the same time, positive, as well as compassionate way. Alexandra’s courage and her confident, intelligent role as one of the teen ambassadors of the TS Association should indeed inspire others. She shines, like the Tapanzee Bridge lit up in teal !! Her family’s steady and unwavering support and devotion during the many challenges can only serve as a prime example for others who may find themselves in similar circumstances. Bravo on the article!!
Thank you for such an inspiring article! I’m truly blessed to be her grandmother!
Well done, Alexandra! We are VERY proud of you and your wonderful family! You were raised doing good deeds, and now you outdid yourself! Way to go!
Alexandra is truly a trailblazer. Continue to work towards educating everyone about Tourette Syndrome young and especially the adults.
Great job!
I am so proud of Alexandra Cuttler and all of her fellow teen Tourette Association of America-New York Hudson Valley Chapter Youth Ambassadors for the work they do to spread awareness, promote acceptance, and provide support to other kids with Tourette in our schools and communities.
I have heard from children, adults, families and friends whose lives are impacted by Tourette who either viewed the teal lights of the Governor Mario M. Cuomo Bridge in person on Saturday night or have learned about it, read about it, or seen photos or video footage of it in the days since. They say that the Bridge lighting made them feel respected, empowered, inspired and hopeful — and part of something large and important that extends beyond their own individual stories and struggles.
Thank you to the River Journal for publishing this article and recognizing the value of Alexandra’s efforts to educate others and improve the lives of those impacted by Tourette.
–Sharon Hammer, Tourette Association of America-New York Hudson Valley Chapter, Youth Ambassador Program Coordinator
A very inspiring story.