Blake Leitch

Blake Leitch

When I was three years old, I had seen someone do a wheelie in their wheelchair. I was thoroughly impressed by something so cool, and made the very clever decision to recreate what I saw.

Unfortunately, my grasp on physics was rather primordial. Looking through the subsequent crimson sheen is my first memory, so SMA (II) is truly something that has been part-in-parcel of my life since the very beginning.

Moreover, with my older brother also being diagnosed with SMA, it has been a constant companion (for better and worse) for over three decades. To try and corral SMA into a quick and simple description on daily life becomes resultantly difficult.

In another way, it becomes decidedly simple to reflect on the physical degradation of my life. At one time, I attended Massey University while writing for the university magazine, I held a part time job, I was an avid writer of poetry, I was a part of numerous writing groups, I was well integrated in my church (including writing for them), and I had a thriving social life.

It’s been fifteen years since then, and I now struggle to write more than a poem here and there. I once typed on physical keyboard, and am now struggling to write this with an on-screen keyboard. I once went into classes frequently, and now struggle to leave the house. My constitution has become so much less than it was, a cold wind can now do serious immunity harm. My lungs breathe shallower; my pains strike sharper; my jaw struggles with food; my throat struggles with breath.

My brother died three years ago, a simple flu taking the last that he could give. It’s a grim look into a future I know awaits me.

The idea of any kind of SMA treatment growing up was something of a pipedream. However, it seems as though that dream is now tantalizingly within reach.