- Pray that we would feel God's presence, eagerly seek Him and remember to keep trusting His promises when we find ourselves overwhelmed by the current struggles of this life.
- Pray for a solution to the continued seizures and that our little guy would be able to get back to where he was several months ago in regards to his overall happiness, alertness, health, and mobility.
- Pray for breakthroughs in science that will lead to effective life-changing, life-saving treatment options for children born with PBD-ZSD.
So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…