I received some crappy news last night. There’s probably a better word to use than crappy, but that’s the one that comes to mind. A fellow mom with ALS passed away, leaving behind three kids and a husband. Lorri Allen was diagnosed with ALS in March of 2013. She was 48 when she died on Dec 21, 2014.

I knew Lorri only through Facebook. We were part of a small group of moms with ALS, a group I value immensely. Thoughts, hopes, fears, laughter…we shared them. At first, Lorri was always involved in the group, posting, responding, leaving a kind word or a helpful comment. But in recent months, she was not hugely vocal. Her ALS moved quickly, and typing became really hard for her. Every so often she would check in, and it was always a relief to hear from her, and to know she was still there. One of Lorri’s last posts in our group was a piece of advice to a recently diagnosed mom. She made that effort, so difficult for her, in order to let someone else know they were not alone.

I was thinking about Lorri just last week, and I realized that, though we were in this private group, we were not actually connected as “friends” on Facebook. I sent her a request, not knowing she was already gone. Her symptoms started in January 2013, we “met” in February 2014. We didn’t even know each other for a full year, and we never met in person.

But here is what I know about Lorri, firsthand. She was funny, she was present, she was an incredibly caring person. She checked in, she told stories, she wrote us notes on our birthdays, she noticed our haircuts. When it was still manageable for her, she was a part of every post and conversation in the group. She progressed faster than the rest of us, and we were the recipients of her good advice. She homeschooled her three kids, now teenagers, and said that she had been blessed to spend that time with them. She was someone worth knowing.

I learned even more about Lorri’s life from her obituary. She was an athlete. She loved baking and scrapbooking. “She was a dedicated and quick-witted teacher who made schooling fun, while inspiring each of her children to pursue their unique interests.” Those of you who are more observant may notice that the obituary spells her first name with one R. She always spelled it with two, so I’m using her way in this post.

Lorri’s death has hit me hard. She was 48 years old; it is not an age for dying. December 30th would have been her 25th wedding anniversary. And she is a person who so clearly made the world a better place. One of the other moms said that this makes everything seem so real. I think she’s right.

In some ways, having ALS makes me feel like I’m in a war, watching my friends fall like soldiers at battle. There’s so much loss to bear. But I will keep working and fighting to end this, and I’m adding Lorri Allen to the list of reasons that someday this disease must absolutely be stopped.

I’m adding other names, too, like Jason, Caleb and Kylie, three kids who used to be homeschooled by their wonderful mom, but have now entered an entirely new year without her.

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