James is the heart and soul of our family—a bright, curious, and loving 3-year-old who brings joy to everyone he meets. He has a passion for garbage trucks, trains, his ATV, being outside and reading and a knack for making everyone laugh and being a loving boy.

On March 15, 2024, our lives changed forever. As we sat down in the neurologist’s office to discuss the genetic test results, we were not prepared for what the results actually said. James was diagnosed with a rare, genetic, fatal disease: Batten disease type CLN2. We were in shock. How could this little boy, full of so much life, joy, and love, have this terrible disease? It felt like we were in a nightmare and wouldn’t wake up. We already had an appointment lined up with a second-opinion neurologist five days later. She ran more tests and connected us with UNC Hospital. Before we knew it, we were at the hospital in April, getting James’s reservoir implanted in his head to receive four plus hours of infusions every other week. May 30th, James had his first infusion and he was a trooper.

The devastation this disease brings to families is heartbreaking. That is why our family is dedicated to raising awareness about Batten disease and supporting efforts to find a cure. Every milestone James reaches is a reminder of his strength and the importance of hope. He is a fighter and he is teaching us to fight with him. We won’t give up until a cure is found and Batten Disease no longer has a place in this world. We are so proud of James and cherish every moment with him. His journey inspires us to be better, to live fully, and to never stop hoping for brighter days ahead.