For the first time, there will be a walk in St. Louis this year to raise awareness and suport for the CJD Foundation.  I wanted to share our story so you know why I’m walking.

Most of you know, I lost my mom to Crutzfeld Jacobs Disease (CJD) April 19, 2016.  It was just a few shorts months prior to that, that I'd even heard of this disease.  My mom was a healthy, active 63 year old.  She watched my 3 active and wild boys everyday. She was happy and enjoyed life to the fullest.  She lived each day for her family...that's what was most important to her.  

In August of 2015 she started to be more forgetful than normal, nothing too alarming but something my dad took her to the doctor for and the doctor just brushed it off saying we'll keep an eye on it.  Her memory continued to decline more and she started to get lost when she was out driving in familiar areas.  In October of 2015, my dad and I  took her back to the doctor and they could see a noted decline since the August visit.  They recommend we see a neurologist but we couldn’t get in until February 2016….there seemed to be no sense of urgency.  She continued to be her same happy self and laughed this all off and said she was fine.  We went through the holidays like normal assuming nothing was too terribly wrong and the doctors would figure something out.

Finally, in January, things were getting noticeably worse.  She began to stutter her words, she would get lost in her own house and her memory continued to decline.  My dad called the doctor and insisted we get something done as soon as possible.  The doctor scheduled an MRI for the next day.  It was January 25th that these 3 words entered my life: Crutzfeld Jacob Disease (CJD).  I had only recently heard of CJD and really didn’t know anything about it. So of course I went to google.  My worst nightmare was coming true.  Doctors thought my mom had this very rare brain disease.  All the articles say "One in a Million" will get this disease.  They call it sporadic, no known reason how someone gets it.  There’s no cure.  There's no treatment, and it’ a fatal disease.  Usually sufferers will die within 1 year of FIRST symptom.  How could this be?!?!?  How can such a cruel disease exist and no one knows about it?  CJD often gets misdiagnosed as Alzheimer’s.  The days and weeks following were extremly difficult.  Seeing my mom deteriorate by the day was completely heartbreaking.  She became unsteady on her feet, eventually unable to walk, talk, or even feed herself.  In just 3 short months she went from being completely healthy, being active with her grandkids, going to soccer games, shopping, and enjoying life to bed ridden, unable to care for herself and there was nothing we could do to help her but to be there for her and with her to make her comfortable.  But through it all, she continued to smile, laugh, and bring joy to all of us.  

We were completely lost but the CJD foundation was so helpful getting us in touch with the right people to help us navigate through this process.  They led us to Dr. Ances at Washington University.  Dr. Ances and his staff were amazing.  They didn’t take my moms insurance but Dr. Ances offered to see her anyway.  He went above and beyond to answer all of our questions and helped us through the difficult days ahead us.  He offered to talk to my dad anytime, day or night whenever we needed anything.  We are forever grateful for him and his staff for their support and medical assistance.

The past 3 1/2 years have been so difficult for my family, but we are learning to get along with our new “normal” life as my mom would want.   I’m hoping by sharing our story and walking in memory of my mom, we will create more awareness of this horrific disease and hopefully someday there will be a cure so other families won’t have to go through what we did.  We truely appricate all the love and support from our family and friends these past few years.  We could not have gotten through this without you!  I hope some of you can join us as we walk in memory of my mom.