We took Ethan's walker to church today. I only recorded a few seconds, but he walked around for probably 5 minutes of more exploring the church hallways and the gym. After resting for a few minutes he walked a little bit more, but we could tell he was worn out. Click here to view the video.
Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.