Voices of the Spina Bifida Community: Paul’s Story

Meet Paul

Paul is 23 years old and lives in Hempstead, New York. He is a man living with Spina Bifida whose story reflects resilience, discipline, and the ability to keep moving forward through life’s challenges.

One of the biggest challenges Paul has faced is undergoing more than 90 surgeries. After each surgery, he has remained determined to come back stronger than before. That mindset has carried him through difficult moments and helped shape the person he is today.

Paul also wants people to understand that Spina Bifida is not the same for everyone. As he shared, Spina Bifida is often known as the “snowflake disability” because each person’s experience is different.

Living with daily accessibility challenges has taught Paul how to problem-solve, adapt, and navigate the world with determination. Those experiences have helped him become someone who does not give up, even when he faces obstacles.

The support that would make the biggest difference in Paul’s life is understanding. He hopes people will take the time to recognize the challenges he faces and not judge him based on assumptions.

Paul describes himself as resilient, determined, and adaptable. His story is a reminder that strength is not only shown in big moments, but also in the daily choice to keep going.