Amy Janisse, diagnosed in October of 2013 at age 29.
Died January 12, 2018.

I woke up one day in November 2012 and I was tongue tied. I was slurring my words, and couldn’t figure out why. Before I knew it, it was July and I was dropping drinks while working as a bartender. The strength in my right hand was off. I started having fasciculations in my legs and made an appointment with the neurologist. On October 10, 2013 they asked me if I had ever heard of ALS. As I sat there with my head spinning, as they were telling me the grim statistics, I could only think of my family. I grew up without a mother and I couldn’t let that happen to my 6-year-old son.

Early on after my diagnosis, I decided I was going to hold on to hope. I wake up hoping every day that my body will stop the disease progression or that the medical world will come up with some miracle cure. There is a silver lining to every curveball life throws at us. I am happier now than I’ve ever been. I have my husband Sean and son Tyler who take care of me daily, my extended family and in-laws who help in any way possible, and a whole community who has rallied behind me. I truly am blessed.