Charlie Butcher

After 50+ years of working hard, saving money, and ending 2 marriages, Charlie Butcher finally got what he had always wanted out of life: a house he could call home, secluded in the mountains of West Virginia. I can still remember him telling me how all he wanted was to live like Grizzly Adams and sit on his front porch and shoot squirrels.

Dad had spent 20 years in the Army and naturally, we moved constantly during that time. We all knew that when he retired, West Virginia would be the last stop. Times change and so do people and as a result of divorce, Dad went to West Virginia alone and we [the kids] went to Alabama with Mom.

The years passed quickly and before I knew it, I was married with 3 boys of my own. Our trips to West Virginia were treasured but unfortunately few and far between.

I knew something was amiss in September of 1995 when Dad started calling me everyday. We always talked at least once a week but he was forgetting our previous conversations. He told me of his 'gait' problems and I noticed personality changes that were definitely NOT my Dad.

Dad went from Doctor to doctor and from specialist to specialist with no one giving an accurate diagnosis or even the most remote idea of what could be wrong. Dad continued driving, against everyone's wishes, until Feb of 1996 when he had his 2nd major accident. This one put him in the hospital we had no clue that he'd never come home again. The injuries were serious enough that Dad was transferred to a University Hospital in Virginia. I packed up my children and a friend and away we went to Virginia. In my heart I knew that once Dad saw me, he would 'snap out' of this "confusion". I was wrong.

I think back and remember how devastating that was...... your own father, so confused and unaware. A man that had always been the epitome of strength and honor, ripped to shreds before your eyes. His face lit up when he saw his grandson.... it was a good sign.... he knew him!

Later, we sat talking, he said "You know, Dad loves you..." I said, "I know, I love you too and you're going to get better, I promise. We are going to find out what is wrong and you'll be back home in no time." If only we had known, Dad wouldn't get better, nor would he ever be able to go home.

My dreams are still haunted by his pleas to come live with me and my promises of finding out what was wrong. We do know what was wrong but I can't leave it alone. I can't accept the fact that he died from a rare disease that only strikes one in a million and I can't accept the fact that there is such limited information for families and I won't turn my back on this issue until I see something changed.

One of the most infuriating issues we have faced was the fact that CJD is NOT reportable!!! The ICD-9 [the book of code numbers used by states to report deaths to the CDC] says that CJD is a Class 5 disease "Of unknown origin with no treatment or cure and not necessary to report". Well.... that is today..... we can change tomorrow. If they don't look they won't find.... I've looked, I've found, and I see way more than 1 in a million!

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