In Support of Keep Mattie McKoy Rolling
Support Registry
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đź’š Mattie Update
Our fierce, beautiful boy Mattie has passed away. He is no longer in pain. He is free.
We love him more than words could ever hold. Every breath, every decision, every moment of this fight was wrapped in our love for him. That love doesn't end. It never will.
Mattie gave everything he had—and somehow kept giving more. Through so much suffering, he still smiled, laughed, loved his people, and made us proud every single day. He fought with everything he had, and we stood with him every step.
💚 He’s not in pain anymore.
💚 We’ll see him again.
đź’š Fuck NF. Fuck mitochondrial disease. Fuck brain tumors. Fuck spinal cord tumors.
Thank you for standing beside him—and us. He mattered. He always will.
Mattie McKoy is 15 years old and lives with mitochondrial disease and neurofibromatosis type one. He has multiple spinal cord tumors that are slowly taking away his ability to walk, breathe, and function.
Mattie has had numerous surgeries to prevent the spinal cord tumors from compressing his spinal cord, and he is currently on oral chemotherapy to slow down their progress. However, his family was recently told they are out of treatment options and that there is nothing else that can be done to stop disease progression.
After getting numerous outside medical opinions to confirm the situation, Mattie's family has decided to do everything possible to give Mattie and his siblings the best quality of life they possibly can.
Because of these tumors, Mattie is wheelchair dependent and recently got a power wheelchair approved by his health insurance. However, his family does not have a wheelchair van to get the power chair out and about without great dificulty.
The biggest unmet need Mattie has is access to a wheelchair van. A family friend has a generously offered to sell us their gently used, low mileage wheelchair van for a very low cost. This will be a huge blessing for Mattie and his entire family.
Any assistance towards the cost of this van would be greatly appreciated by Mattie and his family.
Update: we have been able to purchase the wheelchair van. Now, funds are being used to meet Mattie's and our family's needs as his disease progresses.
Mattie has been very sick this past year and hospitalized frequently. Right now, he's getting pediatric concurrent hospice care. This means Mattie can receive both treatments to make him better (curative services) and comfort care (hospice services) at the same time. This gives Mattie the best chance to feel good while still trying to get better. As needs change over time, the Support Registry will update.
We have a Meal Train and an Amazon Wish List to also support Mattie and our family's needs (both fun and physical). You can also send gift cards for meal delivery services on the Meal Train link if desired. This is a huge support when Mattie is in the hospital. The Amazon Wish List has some fun items for Mattie and his sibling to enjoy as well as some practical needs as well. The kids LOVE getting the items and the surprises. It brings them a lot of joy.
Updates
Keep up to date as needs change.
Jun 26, 2025
Mattie's Obituary and Celebration of Life Details
Mattie McKoyOctober 11, 2008 – June 22, 2025Mattie McKoy didn’t ent...
Jun 23, 2025
Mattie update đź’š
Our fierce, beautiful boy Mattie has passed away. He is no longer i...
May 29, 2025
Mattie: Leading the Way, Even Now
“I can do six impossible things before breakfast.”That’s not just a...
- Created Nov 20, 2023
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Support Registry
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Words of Support
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Rosa Philip
Lisa Boulanger
Pattygullick@gmail.com
Erica Hackworth
Rthompsonmdog