For the last two and a half years, my family has been surviving through something most people have never heard of: pediatric autoimmune encephalitis. This illness set in suddenly and stole parts of our son that we knew and loved—his speech, his personality, his ability to learn, and his ability to feel safe and in control. One day, he was running, talking, and laughing freely. Then, over a handful of weeks, he slipped into confusion, fear, and silence.

To see what AE is like, you can stream the movie "Brain on Fire" on Netflix ->https://www.netflix.com/title/80128245 . Keep in mind, the woman the film is about was sick for about a month. For children, it takes much longer for doctors to confirm the diagnosis, and therefore, before true treatment can begin. Warren has had this happening to him for almost 3 years now, and we've heard of others who suffered even longer, leaving permanent brain damage.

What makes it even harder is that he has a form called seronegative autoimmune encephalitis. That means his labs didn’t show any of the currently known autoimmune antibodies. For a long time, doctors didn't know what was happening. We were told we missed that he was high needs autistic, or that it was just behavioral. And then that maybe it was a rare form of epilepsy that affects speech (he has seizures now because of this). One doctor said it must be a genetic disease nobody has discovered and we can’t do anything about it. We knew something deeper was wrong. We kept pushing and searching. Eventually, doctors looked more closely at his symptoms, EEG, and history—and finally recognized the signs of autoimmune brain inflammation.

It's a rare disease. But not rare enough. Roughly 1 in 1,000,000 children each year develop autoimmune encephalitis. And about half of them—like our son—don’t have detectable antibodies. That makes it much harder to diagnose, and many families suffer through months or years of misdiagnosis, fear, and heartbreak before they get answers.

It took us years of not giving up. We spend our days in therapies and doctor appointments. We travelled to neurologists in four states. Finally, our son is now receiving immune-based treatment. We’ve seen improvements, but they don’t last as his brain is still on fire.

Our sweet Warren is still in there. And he is trying hard to shine through. We see glimmers of him more and more. This summer, he will be doing chemotherapy treatment to kill off his immune system entirely. We pray this will be the miracle he needs. To keep germs away and promote his brain's recovery, my husband and I are both taking a month leave from work and we will all be isolating at home.

At the same time, three months ago, our oldest child, August, became very ill. Thankfully, it was much faster to get his diagnosis and he is continuing to receive care, although his different (but also terrible) autoimmune disease of HSP has caused some internal complications. We now have two children in two different cities at two different hospitals receiving care. To say this has been a difficult time for us is an understatement. We appreciate any help that you can offer.

Any proceeds we make will go to pay off medical and therapy bills that have accrued over the last two years. Our doctor also warned us that insurance may deny coverage of Warren's chemo and it is quite expensive. If we have anything left over, we will use it to convert our garage into a sensory room for Warren to play in safely. And if we are so fortunate to have a surplus beyond that, it will be donated back to charities that assist families like ours when they are struggling.

Thank you and please know we love you all and appreciate any support. We hope to help others as much as possible once we are through this time.