I’m really grateful for the help and support l’ve had from Bio-gen! They’ve been with me from the start and have stayed with me through each block or difficulty in this quest. Still, getting it is only the start. What I do while on the drug will be more interesting. It’s not enough to just …
Read More Can’t Rebuild Without Breaking Down FirstA lot of good things happen yesterday and I should have written about them, but I used up my energy on my rant. Sorry about that. My goal here is to get on Spinraza, do all I can to reverse what SMA has done, and document all of it. Earlier this week I called to …
Read More Spinraza Update 001My strength is still low so today’s post might be short again. It’s great not getting sick! That will make other things easier and I can focus on the healing factor. I do wish it came as a packaged deal but still very greatfull that it is harder to get sick. One other power I’ve …
Read More Wolverine Healing Factor… Not Yet…I moved to Utah a year ago. When I got here I got covid and was sick for a full week! It’s been over a year and I haven’t gotten sick like that since! I’m not sure what is making me immune to common illness. l’m grateful for whatever happened over the years that gave …
Read More Wolverine Like Immune System!On my previous post I talked about acceptance. Acceptance of what the Universe has to offer. I’ve learned to be grateful for what the Universe has to give, especially if there is something I get to learn. I’ve found that the Universe is more likely to surprise you if you’re not complaining! Last post I …
Read More Go With The FlowOne thing I learned and am grateful for is to accept things for how they are. It would be so exhausting trying to force everything around me to be wheelchair accessible. I can’t be mad at a friend for living in a house that isn’t accessible. It still hurt’s when there is something I can’t …
Read More AcceptanceThere is so much I want to cover but it will be difficult in a short write form. I ‘ve increased the time frone ten to twenty. I still write very slow and this will just keep changing. On the plus side it gives me more content because it spreads out what I had outlined. …
Read More Achieving The Impossible (Part 2)In my last post I talked about looking at my frustrations as challenges. My first challenge was to master my wheels. These were now my legs and it was important that I controlled them perfectly. It took me a number of years for me to get where it looked Like I had mastered my wheels. …
Read More Achieving The Impossible: Milestones Amidst SMANavigating the Early Years I didn’t get a wheelchair until I moved to the states and a power wheelchair when I was ten. The level of frustration before the wheelchair was probably at its highest. For any D&D friends, my strenght was set to 1 and my movement was also 1! I had to get …
Read More My SMA SagaAllo, welcome to my page! My name is César 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 …
Read More My SMA Odyssey