Roxbury PBA 311 5K Charity Run/Walk

All proceeds will go to John Bauer aka JOHN BEAR.  John Bear was born on December 17, 2020. Besides being born with some cloudiness in his right eye, he seemed absolutely perfect. However, in early August 2021, John was rushed to the ER for displaying sudden loss of head control and was quickly diagnosed with a serious form of epilepsy, known as Infantile Spasms. After this diagnosis, many rounds of genetic testing were completed before doctors discovered that John inherited a rare genetic disorder, known as a COL4A1 mutation (Gould Syndrome). At the time of John's diagnosis, less than 100 cases in the world were documented, and John is currently the only person with his specific variant. This disorder causes small-vessel brain disease and is a multi-system disorder affecting his other organs, such as his eyes, kidneys, and heart. Doctors discovered that John suffered from an in-utero stroke, which caused his treatment-resistant epilepsy. John had surgery in January 2023 to see if he would be a good candidate for brain surgery in the future, which he unfortunately is not. In March of 2023, John had an additional surgery to place a Vagal Nerve Stimulator in an attempt to help his seizures. John has been hospitalized several times due to his epilepsy, most recently spending time in the PICU in September 2024. Despite his medical challenges, John is a very happy boy who loves school, rocking out to music, and spending time with his family.