The Journey We Are On.....

The thought that Ethan might sleep apnea was first brought up to us by a neurologist in December 2015 and was verified in February 2016 through a sleep study. On Tuesday, May 24th, Ethan finally had his tonsils and adenoids removed. The hope is that their removal will help decrease the sleep apnea which in turn should reduce the seizures, since almost all of Ethan's seizures are breaking through while he is sleeping.    On Tuesday morning we arrived at the hospital at about 5:15 am for the surgery that was scheduled for 8:00 am. We were taken up to the pediatric floor and from there we were taken down to the operating room. The surgery went smoothly and afterwards we were able to see him in recovery. Ethan was in recovery much longer than what is usual simply because there were no beds available for him on the Pediatrics Intensive Care Unit / Pediatrics Intermediate Care floor.  It was after noon before we were taken to a room and things seemed to be going...

We may hate PBD-ZSD but we love our GFPD family. The Global Foundation for Peroxisomal Disorders has truly become our second family. Check out this short video to meet some of the other families who, like us, have had their lives forever changed because of PBD-ZSD.  As of today, the GFPD only knows of 89 children in the U.S. who are living with PBD-ZSD. It is estimated that approximately 80 children are born with PBD-ZSD each year in the U.S. and approximately half of these children will not survive past their first birthday. We are passionate about raising awareness and funds for research because we pray that a breakthrough will be discovered in Ethan's lifetime, but even if that doesn't happen we will keep fighting because this cause is so much bigger than just our family. In the next couple of weeks we will be sharing details about how you can get involved in our bowling and silent auction fundraising event that will be in September. Even if you aren't able to att...