I had several baths at the hospital, but here I am all wrapped up after my first bath at home. Mommy and Daddy seemed so nervous giving me a bath, but all I could think was, gee... I'm cold!
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.