Cesar's Move

My name is César. I was diagnosed with Spinal Muscular Atrophy (SMA) in the mid-90s. It is a genetic disorder that has affected me from birth. Until recently, it had no treatment. I've been in a wheelchair since nine, and my body has conformed to my chair.

Thanks to new developments in medical science, there is now a treatment called Spinraza. This is not a complete cure, but it will help restore a protein my body is missing.

I don't typically see SMA as a negative. I have done more, seen more, and been able to experience more from my wheelchair. Despite progressing negatives, I have also learned to look at SMA or my wheelchair as a superpower.

It feels weird thinking that SMA is coming to an end, but it is time for things to change, and I’m up for this new adventure.

Spinraza is not yet fully covered by most insurance, and it is costly. With the help of the pharmaceutical company BioGen and a new job opportunity, I will finally be able to start Spinraza.

STEP 1: Move Closer to Treatment

Over the years, I've gotten by with the help of many amazing volunteers, but it takes time to build such a network. Moving is tricky. I don’t qualify for medicaid/medicare–this means no caregivers and other benefits when wheelchair bound–I would need to hire people and pay out-of-pocket. BioGen, while willing to give me Spinraza, can't cover the administration since it is quite involved.

STEP 2: Build Support Network

Taking Spinraza won't be enough alone to get me out of my wheelchair; Equipment, physical therapy, deductibles, and other expenses are necessary for me to fully break out of the cocoon I've created.

STEP 3: Fly like a butterfly, Sting like a bee

The purpose of this page is not to raise all the funds, but I hope to get things rolling. I am deeply grateful for anything you can contribute!