My mother, Sandra Kelly, was taken by sporadic Creutzfeldt-Jakob disease on March 24, 2008.

In late February of 2008, she began having symptoms similar to early onset Dementia. However, the symptoms appeared all at once and progressed rapidly, thereby ruling out this diagnosis. For the next month, she was sent back and forth between a mental hospital and a regular hospital, and the doctors were unable to diagnosis the problem. It was like a real life episode of “House.” Toward the end, she wasn’t able to speak normally, recognize loved ones, or perform basic human functions.

I remember one day visiting her in the mental hospital, she wasn’t even able to leave her hospital bed and have a normal visit with me, unlike most of the other patients. I spoke with her nurse, who told me that my mother would not recognize me or even be able to form full sentences. She recommended I just talk to her as if she did know who I was. I was only allowed to stay for one hour—the longest hour of my life. I vividly remember sitting beside her bed telling her how school was going, discussing the weather, and filling her in on my nephew Trey’s latest developments. She didn’t recognize me, nor would she allow me to give her a hug. It was a very sad day. She was finally diagnosed with Creutzfeldt-Jakob disease (CJD) on a Friday. My mother had a living will, setting forth that if she was ever diagnosed with a terminal illness that she did not want to remain on life support. Shortly after her diagnosis, she was taken off the machines. She passed away the next Monday, just three days after her diagnosis.

I am passionate about raising awareness and helping those who are affected by watching their loved ones become overtaken by CJD. I have put together a 5K run/walk that will take place April 27, 2013 at Tanglewood Park in Clemmons, NC. Proceeds from this event will be donated directly to the National Organization for Rare Disorders, Inc. and earmarked for CJD research in loving memory of Sandra Kelly. Please visit my site for more details.

Thanks for your support!

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