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.