Kolby Strong!

Hey everyone, my name is Kayla and we are creating this go fund me on behalf of my best friend who is also the most amazing mother and person i know. A lot of you know Zoie’s story with Kolben and Julian, but for those of you who don’t, please read as their family could use any kind of help they can get during this time.

“Kolben, who is 9, and Julian, who is 6, both have a rare disease called NF1.

Kolben had two brain tumors and underwent Chemo when he was 2 years old for 18 months which didn’t shrink the tumor but it stopped growing. Kolben has been stable until last year when they found another tumor in his cerebellum, we opted to just watch it and see where it would go. Last year it didn’t grow. The last couple of weeks Kolben has been having a lot of headaches and then started complaining about blurred vision. I called his oncologist and she got him in for a STAT MRI. On 4/10/25 we had the MRI & it showed it has grown & his CSF is low and leaking. Which would make sense for his headaches/blurred vision.

The tumor board met on 4/11/25 and decided it would be best to do a resection to remove the tumor and do a biopsy. We find out Friday April 18th more details and the date of his surgery.

Julian started chemo when he was 3 years old & is currently still on it. Julian has a brain tumor and also a tumor that goes from his wrist all the way up his arm to his shoulder and is going through his chest wall. Julian also has Congenital pseudoarthrosis of fibula and there has been a break in the bone for the last two years. With the NF1 disease, the bones do not heal properly so it is extremely difficult to heal and most cases normally end up in amputation. Julian has another disease called Alpha-1-antitrypsin deficiency which affects his liver and lungs.

Winston, who is 8, was JUST diagnosed with the same Alpha-1-antitrypsin disease that Julian has.”

The above was written by Zoie to help better explain the health issues 3/4 of her boys deal with. Most parents couldn’t even imagine dealing with one child who has a life altering disease. Zoie and Phill have three boys who have gone through so much. They are the hardest working and most loving parents and do everything possible to make sure their family has everything they could ever want or need. They NEVER ask anyone for help. They honestly weren’t even sure if they wanted to agree to this, but they will both have to take a week or more off of work for Kolben’s brain surgery as well as travel back and forth for their three other boys at home. They give so much and never ask for anything in return. Even if you do not want to or cannot donate, please share their story so we can try to make sure there is nothing they have to worry about besides being there for their kids during this time.

A fundraiser is being planned, but until we know the date of Kolby's surgery the date is not confirmed. The tentative date is Saturday, June 7th. A page will be created and posted here once we have confirmation. We are looking for volunteers to help run the event, items/donations of any kind. We are also setting up a meal train, but again, would like to know his surgery date first to make sure meals are coming at the time they are most needed. Details will be posted for that here as well once a date is confirmed, so keep an eye out for updates!

If you have any questions about anything, please reach out to Zoie herself, Kayla Looper or Jessica Day. Who are the ONLY ones creating links for donations/information and updates.

Their family thanks every single one of you

#KolbyStrong #JujuStrong #WinnieStrong