It must be Thankful Thursday because I am happy to share that Ethan wore his glasses for over an hour at school and then I took him to PT at the hospital and two different times he walked more than thirty consecutive independent steps. The first time was 39, and he ran out of room or he would have had more. Later in the session he completed 35 independent steps in a row. This is huge, we haven't had more than a few steps in a row since the end of February. With Ethan's CI surgery at the beginning of March followed by sickness for most of March and April hopefully we are finally getting back to where we were back at the end of February when he took 44 consecutive independent steps (his record to date).
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.