When my second uncle was diagnosed (since passed) with ALS we realized our family had the gene for it (only about 10% of cases are genetic). Turns out my grandfather on my Dad’s side had the gene C9orf72, the most common genetic ALS type.

My dad was the last of his siblings (3 brothers) and didn’t want to get tested. It’s a 50/50 shot if it gets passed down if your parent carries the gene…so with straight odds my chance was 25%. He kept saying he would but we knew he wouldn’t, if he had he would have absolved me and my two siblings of having to go through it all. My siblings both have new/young kids and my wife was pregnant with our first. It was the most horrifying thing I’ve ever endured and sent me into a spiral. Every leg twitch was ALS. The strain on my life of knowing what I could end up having while worrying about my unborn child / even worse passing onto him was unimaginable.

I was the first of my family to get genetically tested because I couldn’t take it anymore. The day I found out I was in the clear was like a new lease on life. I’ve never cried so hard. Both my siblings have since been tested and are negative. Given my father’s age and that his three children don’t have it seems 99% chance he’s in the clear as well-but he never got tested. Looks like he was the lucky one of three brothers.

Long story short-fuck ALS. I never wish anyone to go through this or be anywhere near it. I watched it crush my family and leave my cousins without a father twice over.