This is Sean Bowler. Sean is a twenty-two-year-old young man. Sean loves his family and friends. He shows his appreciation for those that care for him every day.
Sean was born at twenty-seven weeks. As he grew, Sean was not meeting his milestones. It was clear that he would need special education services. During his younger years, we were trying to find a diagnosis for Sean in hopes of better understanding his needs, development, and challenges. At six-years-old, Sean was diagnosed with FG Syndrome. With this diagnosis, our family started to make connections with other families with the same diagnosis. Sean’s geneticist at the time was not fully convinced with the diagnosis and after some time we started another search for a diagnosis. In the spring of 2016, Sean was diagnosed with Xia-Gibbs syndrome through genetic testing. At the time of his diagnosis, Sean was the fifth person with a confirmed diagnosed through genetic testing and the twentieth person overall.
