A story of a young rare disease patient fighting over a decade for the answers to his illness. “I remember the first time I was sent to the doctors at the hospital when my MRI came back showing lesions. There weren’t any beds for me at the hospital, we had to check-in through the ER. My mom and I sat in a chair for hours waiting to be able to get a room. I fell asleep with my head on her. I was only 6-7 years old. Little did I know it would bring this ECD journey.”