In continuation from my failed Spinraza experience. I noticed the effects of PTSD almost immediately but not in waking hours at first. Of course I was grieving the loss of a treatment. I felt like I had lost my future all over again, but that was separate from PTSD. Where it was immediately evident was…

I heard about the FDA approving a treatment for SMA as soon as it was announced. The easy name for it is Spinraza. It was labeled as a maintenance drug meaning I would retain my current physical strength and possibly increase just a little bit. I was/am willing to do anything I could to improve…

Because of my fragile disposition, it’s not a surprise that I needed medical intervention surgically early on. I was about three years old when I started having failure to thrive issues with not eating enough. I was dropping an unhealthy amount of weight and had minor choking issues with food. I would just run out…

Remember when the swine flu was a thing? It’s been quite a few years but it was a big problem when I was in 6th grade. I’m not sure where I caught it but it was most likely either church or school. The danger with a flu or even a cold goes up exponentially with…

I was in 6th grade when boredom started an issue that would snowball into something much worse. I was made to still attend physical education class at that point for who knows why. I would be asked to even change into a PE shirt even though I could do exactly none of the exercises that…

There was never any particular moment when I realized that I was different. In reality, it was a series of smaller events that cemented the divide. Before I mention any of those though, it’s important to specify my disability type. I have spinal muscular atrophy type one also known as SMA type 1. It is…