I started an epic quest June 19th thanks to a reader here at Ability Powered. A few months ago, ProAble messaged me with amazing news. A treatment for Spinal Musical Atrophy had been been approved in America. It’s called Spinraza. I would have had no idea had it not been for her. I can not begin to thank her enough…
These months have been a whirlwind emotions. I have had SMA for 38 years and my whole life has been preparing for certain unavoidable outcomes. Progressively losing the ability to move all my body parts, weakened lung function, and of course the low life expectancies that thankfully I have broken. I had it ground into my head since I was a small child that there was no cure, there was no treatment, there was only fighting the effects. Then in one day… in one Twitter message… all this changed. It was a lot to process, so much so that I still am trying to.
The procedure is one that admittedly scares me. It is a given in shot form into the spinal fluid. Since I had spinal fusion surgery when I was little for Scoliosis this makes the whole thing more difficult. Think about it like this… instead of running a regular dungeon you find yourself in a mythic raid on opening day. I am also a huge wuss when it comes to pain.
I am very lucky to have people that are experts at handling panic mode Short. I never really talked about disability stuff with anyone growing up. This is something relatively new to me. I immediately went literally crying to my best friend because I was partly in shock and didn’t really know how to process the possibilities. I got myself together and I finally told my Mom. Next was the only person that for years I was comfortable sharing this part of life with. We weren’t in touch for a few years and if there was ever a day that I was glad to have him back around, it was then. By the time my brother got home, I managed to get through the news tear free!
Over the next week or so, I read everything I could find and talked to more people. My circle. The people who I’m super close to. I am admittedly still super nervous but everyone all unanimously agreed that I have to give it a shot. I know a lot of people have my back.
I know this is still such a new thing that other people are like me and desperately trying to read as much as they can. So bare with me Ability Powered Gamers, you guys are going on the Spinraza journey with me. I know it isn’t my usual content but it will be cutting into my usual and hopefully it will help someone as much as accessibility guides.