- Pray for all families impacted by PBD. Pray that they would know and feel the Lord's peace, hope and strength on this difficult journey.
- Pray that people will be touched and the world changed because of our kids. Pray that lives would be impacted for the Lord because of Ethan (even if we don't see it this side of Heaven).
- Pray for a miracle! Pray for treatments and a cure! Pray for the doctors, researchers, therapists and teachers who are trying to help us help our kids reach their fullest potential.
- Pray that the increase of the dosage of Cystadene would have a positive impact on Ethan and we would see evidence of that in his blood work the next time it is checked.
- Pray that once we can switch back to an algae-based DHA we would see a decrease in Ethan's phytanic and pristanic acid levels back to normal.
- Pray that Ethan would continue to grow, develop and be a happy healthy boy.
- Pray that Jeff and I would continue to seek to honor and please God as we raise Ethan, whom He has entrusted to us.
- Pray that Ethan would be able to get the rest he needs each night and that bedtime would no longer be so stressful or such a fight.
- Pray for the upcoming GFPD Family Support Conference this summer in Orlando, FL. Many families are still trying to raise the money needed to attend the conference. Please pray that all of the families who want to attend will be able to. Pray for Shannon, Melissa and the GFPD Board of Directors as they continue to finalize all of the details.
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…