Following a busy Christmas season with family, the New Year started out slow as the cold weather and snow/ice kept us inside where it was warm. School was closed numerous times throughout the month due to the snow/ice and/or biter cold temperatures and there were even a few days that the roads were too treacherous for Jeff to make it across town to go to work. One of the best days of the month was Sunday, January 12th when Vicky and Kenna came to visit us! It was a joy to attend church with friends who we consider family and spend the majority of the day with them before they had to head home. I don't think I'll ever get tired of spending time with other GFPD families -- there are so few of us and we are spread out throughout the country/world -- that anytime we get to spend with one another is very special. Despite the weather, Ethan did have several visits with specialists. On the 13th Ethan saw both the GI and the Neurol...
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.