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 PBD-ZSD journey.
Just heard this song today - Mark Schultz "What It Means to Be Loved." You might want to have some tissue ready... but it just be our new theme song for our family. And although our story may not end up like the one in the song, my daily mission must be to alwasy so Ethan "what it means to be loved."