My 15-year old son AJ suffers from CONDBA Disease, which is Childhood-Onset Neurodegeneration with Brain Atrophy. It is as scary as it sounds. It’s a severe, progressive neurodegenerative disorder that starts in early childhood and causes slow brain atrophy, loss of white matter and resultant ongoing loss of cognitive and motor function.

It’s extremely rare. There are approximately 30 kids worldwide that we know suffer from this disease.

Early in his life, AJ was mobile, chatty and loving. By pre-school, he only showed mild developmental delay but then eventually started to lose motor skills. He eventually lost his ability to walk and talk in late 2023 and lost his ability to stand in 2025. AJ now needs a personal wheelchair van to continue to engage in the community and to live the richest life he is able to live.

AJ remains a happy, loving boy. He is well loved, likes to receive hugs, tell jokes and being silly. He loves his parents and big sister. He likes seeing people and enjoys his school and outings to his adaptive programs like baseball and basketball.

Being disabled is expensive. There is a decent amount of support for families of kids like AJ, especially medical and adaptive programs. However, one area of significant gap is wheelchair van transport. Parents are essentially on their own to provide this for their disabled child.

While his disease is life-limiting, we can only hope and pray AJ lives for many more years. As a result, me (his Dad) needs to make a significant investment in a wheelchair van for his use during my parenting time (note: AJ lives separately and goes back and forth between his parent’s separate homes. This van supports AJ at his Dad’s home as his mom has chosen other transportation for AJ).

The van that works best for AJ and Dad would be a base model Chrysler Pacifica with a rear-entry manual fold-out ramp. This is the lowest new van cost and sells for $67,000. The only program available to us is a State of MASS program to partially off-set costs endured by kids with catastrophic illness. I believe I could possibly receive around $24,000 from this program, which I accounted for in my crowd-fund goal amount above.

Thanks for reading. If AJ’s need speaks to you, any help is graciously appreciated.