🧠 Brain Infusion Friday — A Hard Update
Nov 21, 2025

Today is Brain Infusion Friday, but only Maleea was able to receive her life-saving treatment.
Malachi couldn’t. And writing those words breaks me. 😔 because I have fought to make sure they never miss an infusion since day 1.

These last two weeks have taken us into a place we never imagined. Malachi has now had three emergency brain surgeries in a row, and five total in the last six years. We never expected he would develop a brain infection, chest infection, and a bloodstream infection all at once. We never expected to watch him fight this hard to stay alive.

The medical teams shared with us that during his #157 brain infusion — just two weeks ago — Malachi was already much sicker than anyone realized. We were lucky, truly lucky, that we were already at the hospital.
What followed was over a week of him fighting for his life:

nonstop vomiting

unbearable, crushing head pain

the agony of meningitis

Delirium,  hallucinations 

confusion, instability, weakness

his body shutting down piece by piece

It was terrifying. For him. For us. For everyone who loves him.

He has lost so much weight and muscle mass in such a short time. He can barely keep steady. Tremors have taken over his lower body. And now he is suffering from debilitating neurological migraines that are unlike anything I have ever seen:

teeth pain so intense he cries

waves of nausea

vomiting

severe vision disturbances layered on top of his blindness

flashing lights, auras, floating patterns

head pain that brings him to silence

I’ve battled migraines since I was 19 — and his are something else entirely. This is his new battle on top of Batten’s.

We hope with everything in us that this will not be his new normal…
but we also know the truth: it could be.

We are now working with multiple teams to get him the equipment and support he needs — including a specialized wheelchair — so when he wants to be out in the world, we can manage his symptoms, his medications, and his continuous feeding safely.
Our home will need to change. Our routines will need to change. Our entire environment will need to shift around his needs for now.

Maleea did well with her infusion today, thank God. ❤️ We even managed a few much-needed naps — in separate spots, but together in spirit.
Reiff is home taking care of her recovery, while I remain inpatient with Malachi.
Day 15.

We are so grateful for everyone lifting us up — your prayers, your messages, your love. Truly. Because when we go home, the hardest work begins:

no extra nurse hands

no rapid response when things turn

no overnight checks

no help with the 2-hour medication cycles

wound care

bathroom and shower assistance (which he still only wants from me)

constant pain monitoring

managing withdrawals as he is slowly taken off some of the heavy meds

All of it will be on us. And we will do it. Because he’s our boy. Because this is the fight we were given.

We don’t have a discharge date yet. We’re just taking it hour by hour, day by day, trying to support his healing and praying we can give him some comfort, some stability, something that feels like relief.

I wish I could tell you he’s on his way to recovery.
But with Batten’s… sometimes the hardest truth is that this becomes the new normal.

Thank you for holding us up.
Thank you for seeing us.
And thank you for loving Malachi and Maleea through this impossible season. 🙏❤️