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.
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We took Ethan's walker to church today. I only recorded a few seconds, but he walked around for probably 5 minutes of more exploring the church hallways and the gym. After resting for a few minutes he walked a little bit more, but we could tell he was worn out.
Although we have not yet become members of the church we've been attending regularly since moving to Peoria, we are starting to feel more connected, getting to know more people, and are feeling very blessed that we've been welcomed with open arms and hearts. Finding a church home is hard for anyone, but when you add having a child with special needs to the mix, that often adds an entirely different layer of complexity to the situation.
This morning we had a meeting with Ethan's "team." At this time seven ladies (and a possible 8th) have signed on to be Ethan's one-on-one in the nursery so that Jeff and I can attend Bible Study (Sunday School) and the Worship service. We didn't get a chance to meet all of his team members this morning, as some of them had things that kept them away from church today, but those that we did meet seemed to be thrilled about getting to spend time with Ethan. Ethan is in the "crawler" room at church, which seems to be…