I am Kristi Cole

a family member of someone we've lost to ALS


My life stopped at that moment.

My name is Kristi Cole, and my mother Stephanie Raypole had ALS for years without knowing she even had it. She started having a heavy tongue, and couldn’t hardly talk. Then shortly after that, she began to fall, and fall more. No one knew what was going on with her, but we knew something wasn’t right. Doctors kept saying that she had fibromyalgia, and that it causes all sorts of problems.

It became August of 2012, and I had my first son, and she became where she could barely walk, and had PT all the time at the house, and taking care of a newborn that wasn’t sleeping and my mom was really wearing on me. She went to stay with my uncle in Louisville, and he took her to U of L to be checked out. I’ll never forget the November day that year he called me and told me to sit down. So I did, and then he told me mom had a rare disease called Lou Gehrig’s disease, or ALS, and that she didn’t have a year left to live.

My life stopped at that moment. We gathered our things, and went to the hospital to be with her and support her and at this point she couldn’t do anything on her own. She had to point to a piece of paper, where we had wrote down a whole bunch of different things she may need and she would just point to it, or we would say the number and she would blink twice for yes once for no. I was losing my mind at this point, seeing my mother in this horrible state. She was the sweetest, most kind woman to everyone. She didn’t know a stranger. She loved everyone, and would do for anyone and want nothing in return.

She was in full paralysis in the end of January, and they told us it wouldn’t be much longer before she would leave us. She got saved, and it was a beautiful moment. We all stood around as she did. February 9, 2013, I lost her. I laid in the bed as she took her last breaths, and went to heaven. It was the hardest thing I’ve ever been through. I didn’t go to her funeral, or showing, or burial… I was NOT SAYING BYE. I remember physically vomiting the day she was being laid to rest.

For those who don’t know what indigent is, it’s where you are in a wooden box, and the city buries you wherever they have a spot to bury you. I finally asked where she was, and she is somewhere behind a school in Valley Station. My uncle went there not too long ago, and said he couldn’t even find her grave it was all so grown up. Breaks my heart so bad. That’s when I went crazy, and got into major trouble and depression and ended up going to jail for 18 months.

I got my life together and got into school, and am always trying to know the latest about NurOwn & ALS treatment for people still out there suffering from this awful disease. I go to every walk around Lexington-Louisville area that I can. I am always fundraising for ALS. Some medications are not right for everyone, but if NurOwn could just save 10 people, well that’s 10 people!!!! We need to be looking at this as a positive effect towards the ALS organization. This is huge! We’re talking about saving lives! I know that if my mother was still around, even still suffering, I’d make her do it just to see. Who wouldn’t take any chance possible to keep a loved one …? Especially your mother at that.

I always thought she’d see me marry someone, and know her grandkids. She was so sick when Jensen was a baby that she couldn’t even hold him. That tore her apart. She was all about her family. My mother Stephanie Lynn Raypole, was and still is the most beautiful person I’ve ever known, and until the day that I die, I’ll fight for her in her honor for this cure, and hope it saves so many lives.

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