25 December 2023
Tobi Akbas, nicknamed “the Mayor,” has Williams syndrome, a genetic condition characterized by extreme friendliness and a deep need for human connection. This article explores Tobi’s life, his role as a volunteer firefighter, and the challenges he faces as he navigates adulthood.
Since he was a young child, Tobi Akbas has been known as “the Mayor” in his suburban town of Garrison, New York. Diagnosed with Williams syndrome, a rare genetic condition, Tobi possesses an extraordinary ability to connect with others and spread positivity. This article delves into Tobi’s life, his passion for firefighting, and the unique challenges he faces as he transitions into adulthood.
Tobi’s Unique Journey: Williams syndrome is characterized by extreme friendliness, low inhibitions, and a deeply trusting nature. Tobi’s life is a testament to these traits, as he craves human connection and strives to make a positive impact on others. From handing out candy canes during the annual Santa Run to posting motivational “Tobi tips” online, Tobi’s mission is to spread optimism and help those around him.
Understanding Williams Syndrome: Williams syndrome is caused by the deletion of approximately 20 genes and affects an estimated 20,000 to 30,000 people in the US. While individuals with Williams syndrome tend to have a normal life expectancy, approximately 80% experience cardiovascular issues. Furthermore, three-quarters of those with the condition have varying degrees of intellectual disability, requiring lifelong support.
Tobi’s Role as a Volunteer Firefighter: Tobi’s passion for firefighting began at a young age, inspired by his grandparents who lived across the street from a firehouse. Despite his anxiety and sensitivity to loud noises, Tobi has been a dedicated volunteer firefighter for five years. His role primarily involves operating hoses and securing perimeters, and his emotional intelligence and ability to express his feelings make him an invaluable member of the team.
The Power of Tobi’s Presence: Tobi’s natural ability to connect with others is a valuable asset in the firefighting community. His readiness to express his emotions serves as a litmus test for the team, allowing them to address underlying issues. Tobi’s social tendencies also make him a natural ambassador at fundraisers, where he puts recruits at ease and brings a unique energy to the department.
Navigating Adulthood: As Tobi approaches adulthood, he faces challenges in managing his daily routine and achieving independence. While he has lower support needs compared to some individuals with Williams syndrome, basic math skills, time management, and finances remain difficult for him. Tobi dreams of living alone but recognizes the hurdles he must overcome to achieve this goal.
The Loneliness of Williams Syndrome: Despite Tobi’s vibrant personality and extensive network of online friends, individuals with Williams syndrome can still experience feelings of loneliness. Tobi acknowledges that neurotypical people may prefer to spend time with those who are similar to them, which can make it challenging for him to form deep connections. Online communities provide solace, but navigating social environments can still be overwhelming for those with Williams syndrome.
The Need for Connection: Tobi’s story highlights the importance of human connection and empathy. In a world that often prioritizes individualism and isolation, Tobi’s unwavering focus on building relationships serves as a powerful reminder of the joy and fulfillment that can come from genuine connections. His ability to see and support others’ emotions is a gift that we can all learn from.
Conclusion: Tobi Akbas’s journey as “the Mayor” showcases the unique challenges and strengths of individuals with Williams syndrome. As Tobi navigates adulthood, his passion for firefighting and unwavering optimism continue to inspire those around him. His story reminds us of the power of human connection and the impact that genuine empathy can have on individuals with Williams syndrome and society as a whole.
