Ethan's last day of school was Friday, June 12th. I cried. It was an ugly cry. I really loved Ethan's school and it was such a great experience for him this past year. I will miss his school and the opportunities that he had at Valeska. This fall Ethan will be at a new school and a few of his classmates will likely be joining him in the newly created DHH (Deaf and Hard of Hearing) Plus class which is going to be geared specifically for children who are Deaf or Hard of Hearing and have additional challenges. There is still a lot of details to be worked out since this is a completely new class but I am praying that it will be a good fit for Ethan. Last Day of School One of the biggest fears/concerns with school ending is that last summer Ethan suffered a major regression in his mobility during the summer. Ethan does so much more at school than he does for us at home and the amount of therapy he receives drastically declines during the summer, because in many ways he is recei...
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.