Cylas cannot go into remission - none of his current protocol can support it until we deal with the environment that's making him sick.

I feel trapped in a corner with tied hands and a ball gag in my mouth, waiting for someone to walk in the door to release me - but in comes my captor with crumbs and rather than ingest them, I spit them all over the dark room I'm about to be left alone in again when they leave and I'm still tied here.

I feel negligent even though - two years ago I paid thousands of dollars to proudly tackle this very thing. I felt so honored to be able to do what I was told was right. This was when Hayven was first diagnosed with PANS. And we were assured, and grateful we cleaned the slate.

Throughout this process of medical diagnostic testing and environmental testing, the cost is real. But it also demonstrates the silent cost of not knowing how taxed our systems are in the presence of invisible predators to them.

Immunosensitive people - particularly seizure and PANS kids - are very reactive to mold. It triggers the onset and flare of both. And here we are...on fire, in need of some serious water recruitment. If it wasn't for how severe his symptoms have been - we wouldn't have taken a second look.

Two experts suggested we move completely. That's not a viable option for us, so remediation is the only responsible next step. One told me I'd need 100K to make us 'medically safe' enough for us.

While GoFundMe displays incremental milestone goals to help momentum build, the full projected remediation scope is closer to $100K.

At which point the raging helplessness I spit out when people come in to feed me scraps it seems - just gave up on even fighting back. I cannot do this alone in here. And we suffer and I watch suffering unfold because of it.

Which both makes me feel human, and like a guttural failure.

If we were bears, I'd just move us along.

As humans, plotted in social systems - we sometimes stay in our own sickness to avoid our death. And that very avoidance of it keeps us sickly in fear of truly living.

Thankfully, last season we invested in a camper which we will soon be staying in. What was so luxury to receive at the time is now almost as if God got out in front of us for our own honest-to-God survival.

What was a cute-in-theory idea seemed so much more dreamy than sleeping in a small plot near an alley in the cold for reality's sake.

But nevertheless, I am grateful we can call it...safety for a while. So our nervous and immune systems can calm.

His neuroinflammation isn't receding to the background as we hoped it would. And my connective-tissue inflammation drizzled with vertigo is amping way up.

We’re covering what we can. While also feeling regret that when we invested in this to protect us before; we still are not fully covered, and are 'that sensitive' despite our greatest efforts.

This GoFundMe is for the gap because the cost is more than we can absorb all at once without causing other harm.

Cylas's brain encephalitis cannot remit until we submit to an embarrassing reality - that we have put him in an environment that is unsafe for him (and ourselves) & that without the help of others - we cannot easily trust that our best efforts to protect and defend - will get him to safety.

If you’re in a season of overflow and want to support our family’s home being safe to heal in, we’re deeply grateful. I've been preaching about environmental effects for 25 years due to my own immunocompromisation - and here I am - not on top of it - but somehow, underneath it.

If you're where we are right now - where waves slam from every direction over and over again in the middle of an apparent hurricane - I'm waving at you in there, from over here.

Thank you for witnessing us in this chapter. Either way.

Thank you for letting me ask without making me feel shame for doing so. Thank you for not feeling obligated too.