I RECEIVED A WONDERFUL EMAIL REGARDING THE COMMENT ABOUT THE 12 YR OLD
I found a website back in 2002 that mentioned the 12 year old with ALS. I had read a novel called May I Cross Your Golden River? by Page Dixon that was about a young man (18 or 20 I think) that was diagnosed with ALS and, as I hadn't heard of it before that time, I did some Internet research and came across a website that was called ALS Survival Guide. The website address, at that time, was http://www.alssurivalguide.com and also http://www.lougehrigsdisease.net It was run by an ALS sufferer named Doug Eshleman. He had onset of the disease in his late '30s and died at 43 in November 2001. The site has been offline for a little while, but you can still access copies of it by going to http://www.archive.org and typing in lougehrigsdisease.net. I have copied the direct link to the page the mentions the 12 year old with ALS. Her name was Patty and the information reads that she was from Chicago.
Here's the page http://web.archive.org/web/20020619050624/www.lougehrigsdisease.net/als_pages/journal2000-07.htm . As far as I'm aware, Doug Eshleman was from Ohio.