Yesterday marked 20 days since Malachi went in for what should have been a routine brain infusion #157… but instead was admitted for a brain, chest, and bloodstream infection. 

We are beyond THANKFUL for the incredible medical teams who acted quickly—getting Malachi into emergency surgery, treating the infections, guiding his recovery, and supporting him through two additional brain surgeries and procedures on both sides of his chest (three brain surgery 2/chest surgeries total). 

They approached every step with care, compassion, and respect for the complexity of his Batten’s diagnosis—constantly balancing what was truly Batten-related, what wasn’t, and what was being intensified by meningitis and the trauma his body just endured. 

Today, we are THANKFUL to be resting close to the hospital rather than preparing for a funeral— 

Malachi was released last night and for safety monitoring, we stay close to Seattle Children’s,  life doesn’t pause, even when your world feels like it has. 

Our lives are forever changed by these past 20 days. Not only because of how hard Malachi fought to stay alive, but because of the overwhelming outpouring of love, prayers, support, messages, and kindness. We truly have no words big enough for what that has meant. 

Now we enter a new chapter—our new normal.
 We’re navigating a lot of emotions, processing what has happened, and trying to catch up on rest.
 As I write this, it’s 11:52 AM, and I’m just now waking up—my body finally demanding a pause after weeks of nonstop fight. 

We hope to officially head home in a few days and begin setting up the house in a way that supports Malachi’s new needs. But our journey doesn’t stop here. 

We return to Seattle Children’s on December 5th for what will be Malachi and Maleea’s 159th brain infusion. 

This is the reality of Batten Disease—CLN2 life never truly stops. 

The treatments, the hospital trips, the setbacks and victories… they are lifelong till Batten's Disease takes there life (truth) 

But so is our love for our boy.
 So is our fight.
 And so is our gratitude for every single person walking this road with us. 💛