Trickett Fewell Wendler, diagnosed in June of 2013 at age 39.
Died March 18, 2015.

We have a family tradition at every dinner, each person shares their personal high and low for that day. I remember my youngest’s first attempt was such adorable nonsense, “My highs are my highs and that’s my lows. All done, mommy.”

But last month that same little girl, now six, said innocently and matter of factly, “My low is that mommy has ALS and will be in a wheelchair for the rest of her life and die.” We were in shock. We try so hard to keep our focus on the hope…we were at a loss for words. After a few silent tears I replied, “Now wait a minute, yes I have ALS, but what’s important is that we focus on making each day matter and that mommy is fighting.”

Diagnosed June 20, 2013, I was literally taking Zumba classes in March and then in a wheelchair by July. In May, I had my first undeniable symptom that something was wrong. On a business trip I felt too tired to stand, started limping and was in pain for no apparent reason. I was a healthy 39-year-old, celebrating 10 years of marriage, and attempting to balance a successful career while being a good mom to our three children. After two months of tests and doctor visits, I was told they had ruled everything else out, and I had ALS. I would become a younger face with a younger family than is typical with ALS; a reminder that ALS is nondiscriminatory. This nightmare disease considers everyone fair game.

Now I am in a .0001% club. Sounds like winning the lottery, except it’s not. This barely visible club is made of the estimated 25,000 people in the US who share my disease. And double whammy, I have a rare familial ALS…the notorious fast progressive SOD1 gene. What does that mean? I couldn’t help putting words to the letters…SOD1…Sick Or Dying 1…Slow Overwhelming Death of 1…but the name doesn’t work. It’s not just one. ALS, to me, feels like my body is taking my mind hostage. But Familial ALS is like a family curse; my children, my brother, my cousins, my aunts…they are all on the kidnapper’s list.