July 10, 2025 things took a serious turn
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Castillote family
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Castillote family
Long night!
Update
1. Possibly picked up something viral, and being immune compromised and complex it's going through his system causing havoc.
Or 2. the thought process is its neurological nerve pain throughout his spine affecting him (which maleea has experienced a month ago as well)
Unfortunately Malachi loss feeling in his lower limbs they went ice cold he couldn't feel them, and the nerve pain was extremely intense throughout his spine & body.
The SCH team here hasn't been able to really figure it out (team on the floor)
One vital apointment was already on the books for Malachi and that was seeing the pain clinic, the Seattle Children's staff has made it possible for us to leave early to make this appointment.
After that long meeting, Malachi will start some heavy pain receptor meds to keep things stable, and soon will be enrolled along with Maleea into University of Washington Hospital lidocaine infusion trial. We don't have a start date but this Will be an additional infusion ontop of there brain infusions. We will most likely need a hotel one day bi weekly to be in the area to do both.
We have reach out to our Batten's Disease of Excellence hospital CHOC to get there opinion.
They are extremely concerned for Malachi as Batten's does attack the nervous system as the brain continues to send the wrong signals or connections are being lost. We have many many more meetings / questions ahead of us.
Thank YOU to the EMT's in our town of Manson, they were incredible.
We are BEYOND GRATEFUL how many people were and are praying for him! Thank you for all the responses , check ins, txt, calls, etc. It truly means so much to us & him. Thank you to the Cruz Family for taking our Daughter as there own as she didn't need to see any of this.... she's already living it, she's doesn't need to live in fear of what could happen.
Ways to help. Raising funds specifically to cover one day cost of additional hotel bi weekly, gas, food (hospital food has now cut back and no longer providing meals for patients)
If 100 people donated $25 this would result in $2500 to cover one day hotel costs for several months. This will cover almost 10months of hotel stays
Venmo @Sabrina-Castillote
Or SupportNow (doesn't take fees)
https://www.supportnow.org/castillote-family
Blood work looks good
Brain scan looks good
Brain fluid looks good
Chest scan looks good
Update
1. Possibly picked up something viral, and being immune compromised and complex it's going through his system causing havoc.
Or 2. the thought process is its neurological nerve pain throughout his spine affecting him (which maleea has experienced a month ago as well)
Unfortunately Malachi loss feeling in his lower limbs they went ice cold he couldn't feel them, and the nerve pain was extremely intense throughout his spine & body.
The SCH team here hasn't been able to really figure it out (team on the floor)
One vital apointment was already on the books for Malachi and that was seeing the pain clinic, the Seattle Children's staff has made it possible for us to leave early to make this appointment.
After that long meeting, Malachi will start some heavy pain receptor meds to keep things stable, and soon will be enrolled along with Maleea into University of Washington Hospital lidocaine infusion trial. We don't have a start date but this Will be an additional infusion ontop of there brain infusions. We will most likely need a hotel one day bi weekly to be in the area to do both.
We have reach out to our Batten's Disease of Excellence hospital CHOC to get there opinion.
They are extremely concerned for Malachi as Batten's does attack the nervous system as the brain continues to send the wrong signals or connections are being lost. We have many many more meetings / questions ahead of us.
Thank YOU to the EMT's in our town of Manson, they were incredible.
We are BEYOND GRATEFUL how many people were and are praying for him! Thank you for all the responses , check ins, txt, calls, etc. It truly means so much to us & him. Thank you to the Cruz Family for taking our Daughter as there own as she didn't need to see any of this.... she's already living it, she's doesn't need to live in fear of what could happen.
Ways to help. Raising funds specifically to cover one day cost of additional hotel bi weekly, gas, food (hospital food has now cut back and no longer providing meals for patients)
If 100 people donated $25 this would result in $2500 to cover one day hotel costs for several months. This will cover almost 10months of hotel stays
Venmo @Sabrina-Castillote
Or SupportNow (doesn't take fees)
https://www.supportnow.org/castillote-family
Blood work looks good
Brain scan looks good
Brain fluid looks good
Chest scan looks good
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