My name is Shawn, and I’m living with juvenile spinal muscular atrophy. In December 2023, I began taking a medication called Evrysdi. At that time, I was almost completely paralyzed—barely able to move my fingers. Since starting this treatment, my life has changed dramatically. I can now move every muscle in my body, and I’m making steady progress through physical therapy three times a week. My improvements have even led to my participation in a research program, as my results have been so remarkable.

Despite these breakthroughs, I’m currently living in a nursing home. My biggest challenge now is transitioning to a private, accessible home where I can continue my recovery and regain my independence. To do this, I need to secure funding for a home with barrier-free bathrooms, wide doorways and hallways for my electric wheelchair, and enough space for a weight facility and 24-hour staff. I also need specialized equipment like an accessible shower, shower beds, a patient lift, and a swim-in-place pool to support my therapy and ongoing progress.

I know that with the right environment and support, I can continue to regain movement and independence. I’m reaching out for help from anyone who can support this next step—whether through a donation, sharing my story, or offering encouragement. Every bit of support brings me closer to living independently and continuing my journey of healing. Thank you for believing in me and being part of my story.