Hello family and friends! Allison has been on a life-long health journey that requires critical support.

She has been battling a rare, neurodegenerative disease that impacts her entire body. It presents mostly similarly to juvenile ALS. This is a progressive condition. It has changed our lives drastically. She went from doing backflips to struggling to hold her head up.

Allison has had over 13 surgeries and continues to face more. She has multiple factors working against her. Allison had a brain surgery in 2023. But she faced complications that instantly left her unable to walk. Initially she couldn’t speak either. This is on top of the progressive disease. Right as she was hitting new goals and walking with a posterior walker—the disease progressed.

She has limited trunk and head support. Her legs and arms are riddled with spasticity. We have reached a point of care where her doctors are unsure what to do next. She is treatment resistant to medication and injections. Her lungs have been impacted by this disease and  only have 50% function. We regularly have to travel the state and country for care.

Allison’s disease has been progressing again. Her arms have been getting weaker. This has made transfers into our van super difficult—and eventually, impossible. 

We once again have to crowd fund as this is not something covered by grants or health insurance. 

. Allison’s  disease 
Ways to support: