🚨 UPDATE ON MALACHI 🚨 

We urgently ask for prayers.

Malachi’s brain infusion today did not go well. As many of you know, he has been battling an infection these past several weeks. During today’s infusion, his symptoms escalated, and we had to stop his brain infusion. He was rushed from the infusion center straight to the IUC ER and is now being taken into surgery. Malachi is in intense pain, vomiting,  extreme tremors and barley aware of whats happening. 

Malachi is currently undergoing BRAIN and CHEST SURGERY to remove all of the hardware and address the infection. His CSF (brain fluid) results came back positive for infection. He is truly in the fight of his life right now.

Over the last several weeks, Malachi has battled pneumonia, sickness, pain, fatigue, a chest port tissue infection, and now this brain infection. We don’t yet know what type of infection he is fighting, and we have no idea how long we will be in the hospital.

Surgery began around 7:30 PM and is expected to last 2+ hours.
Please—keep him, our family, and his surgical team covered in prayer. The PTSD CSTD we experience is beyond real.....

Tonught Reiff Castillote ❤️ is taking this shift, while I monitor Maleea after her infusion at a nearby by hotel (and allow her to attend as a adaptive clothing model that was planned)  and get the rest in need to keep going. Unfortunately when my baby boy is in extreme pain, im instantly (like when they were babies) in tears. I need a moment to step away as I've been his person these last several months

We will update as we can.
Thank you for fighting this battle with us.

#RareDisease #rarediseaseawareness #battendisease #cln #formalachiandmaleea 
#surgery #seattlechildrenshospital