Dear Family & Friends, Merry Christmas and Happy New Year from the Marshall family! We are once again praising God that we are wrapping up another wonderful year with Ethan. Two thousand and thirteen has been a year filled with many changes, challenges, and celebrations. Last winter Ethan mastered cruising along the furniture and became a super speedy crawler who enjoyed pushing his toys from one room to another. He even began taking steps with his walker! We also reveled in the improvement of Ethan’s sleeping habits! Ethan received more powerful hearing aids to provide him with additional amplification and they appeared to make a great difference in Ethan’s ability to hear the world around him. Unfortunately, in the midst of the happiness, Ethan seemed to be continually battling illness and dehydration which led to many doctor appointments and the introduction of a GI doctor to our team. On the first day of spring we found ourselves on the way to Carle hospital. Ethan...
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.