My SMA Odyssey

Allo, welcome to my page! My name is C├ęsar and been working on creating this site for some time now. My goal is to provide a place where others can learn about SMA. Here you’ll find what I’m doing to deal with SMA. For example these posts. You might be reading this on my website and it is on readable text. Above these posts is a button that takes you to a hand written version of this post! Yes, each post is handwritten and easily converted thanks to and app called Nebo.

The reason for doing this by hand is to track how I’m doing with my SMA. If I’m doing well or getting worse it should be visible by my handwritting. Thanks to Nebo you’ll be able to read my thoughts! This is just one way I’m fighting SMA, and tracking my progress. As time goes on I’ll add more things and explain as they come online.

Diagnosis

Because I’m trying to do this by hand I’ll need to be quick. I want to write every day as a form of exercise. I’ve already used a lot of energy, so we’ll see what I can cover, but I can always fill in the gaps in another post. I was diagnosed at the age of ten in Washington state. This was done in the mid 90’s and was done with a muscle biopsy. Typically, had I been born here in the States I would have been diagnosed around the age of two. However, I spent my first nine years of life in Mexico without getting a diagnosis.

Beign a bit older and getting the diagnosis of SMA was a bit heavy. I still had hope that one day I’d be like everyone else, but this took all hope I had. At first it was difficult to wrap my head around the news. For a while I was angry and upset. Since I’ve already been here for years, the hard part was dealing with the lost of hope. There will be a post about this in the near future.

A New Hope: Spinraza

Due to our advancements and understanding in science my hope of beating SMA has been rekindled. Mainly thanks to Spinraza. I’m not saying this is a perfect cure, and taking it will get me out of my wheelchair. I’ll write a post of what it does, but simply, it restores a key protein l’m missing. This gives me an opportunity to try and gain back what I’ve lost. This site will be used to document that process and point out some cool things on the Horizon. I’ll also add some educational material l’ve been working on about SMA.

Ten years ago I was not able to write this much. A few years ago I couldn’t adjust my glasses. With a few lifestyle changes and a bit of focus exercise, I’ve been able to gain function. More of that in future posts.

I’m working on a way to receive and answer questions. I don’t want to leave comments up because that can get complicated and messy. If you have questions hold on to them, I promise to have something soon. For now I hope you have a great day and you keep coming back!

Adios!

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