CJD and the Quilt

What is this CJD you are probably wondering.  It is a neurological disorder of the brain that takes your loved one away from you right before your eyes.  It is called Creutzfeldt-Jakob Disease and it is like a very fast moving Alzheimer's Disease.  The organism-the scientists call it a Prion, causes holes to form in the brain until it looks like a sponge.  It can effect any part of the brain and the only way that you really know if your loved one has it is after death with an autopsy.  EEGs have certain patterns that show an abnormality and if a doctor is well informed about this disease he may be able to diagnose it this way.  There is also a test with spinal fluid called a 14-3-3 test that shows elevated protein levels, but these are not 100 percent diagnosis.  By the time you know what you are up against, your loved one usually cannot speak, or recognize you or walk. There is more information on a website called CJD Voice.

My Mother, Jean Burgette passed away from this disease in November of 1997.  She was a sharp woman who was creative.  She made beautiful things, like quilts and dolls.  She loved her family and being with them.  She had a wonderful sense of humor and was always ready to hop in the car and go on a road trip.  She loved baseball and especially the Cincinnati Reds and was an avid viewer of ESPN.  I could go on and on, but I won't.  I will just end it that I miss her everyday.  We lost her too soon. 

I started this quilt two years after she passed away, in 1999, because I got to know so many great people who lost their loved ones to this crazy disease.  My Mom made beautiful quilts and I thought what a tribute this would be to make a memorial quilt of the disease that took her.  Could you be thinking, why has this taken her so long?  Life stepped in and took over.  Husband, children, jobs, school, volunteering, etc. etc.  My second child just graduated from high school, and now life is a wee bit less hectic.  I have more time to devote to this project.  I have made a special page for it because I didn't want it to get lost in the shuffle, it deserved more than that. 

When I first started this project and sent out the call for help, people willingly said I will help embroider hearts, gladly. Many members of CJD Voice embroidered and sadly one member, Suzanne made 40 hearts and then had passed away from an asthma attack. Her mother was a victim of CJD and Suzannes sister made sure that I got the hearts that she embroidered.  She also had helped with the silver ribbon for CJD which will be a prominent fixture on the finished quilt.  I had people donate money to help with the supplies.  My quilt club, the Hoosier Favorite Quilters, embroidered hearts also.  It has been very heartwarming and fun.  I believe I have enough to cover the quilt and have more than half put on.

This page will show the progress of the quilt, so please stop by and check in.  Oh and leave a comment, I love to hear from you. 
The progress on the hearts is coming along.  It looks like I have room for 3 definitely possibly 4 more rows of hearts.  I will need to embroider some more hearts, especially men to make it come out evenly.  It seems as if this disease shows no partiality between men and women.  There is never shortage of names.  If I run out of room I will applique the rest of the hearts on the back of the finished quilt.  I believe this will be a very beautiful, memorial for our loved ones that we have lost.   

February 10, 2015
All hearts are attached that have been made.  I have to embroider 8 more of which I have the names.  At some point I am going to have a grid of the quilt with the names and we will be able to click on the names to see the close up of the heart.  After I get the 8 hearts made and attached, I will be embroidering on the bottom "You are not forgotten".
On the sides I will applique vines, flowers and leaves. 
Going over the names recently was melancholy.  I met many of the deceased families at the CJD voice conferences 15 years ago.  We all had one terrible thing in common which brought us together. 

February 19, 2015

Finished embroidering the words on the bottom border.  It is coming along nicely now.  Next step, making the last eight hearts.



Terry S. Singeltary Sr. said...

beautiful quilt robin, nice work for the cause, thanks ! ...kindest regards, terry

Cathy Anderson said...

Hi Robin. Thankyou for what you are doing, and I'm so sorry about your mother. I lost my precious Daddy to CJD on March 8, 2012. He, also was a smart, funny, wonderful man. Everyone loved him. I miss him so much. We have a hole in our world. I wish I could understand why and how. Thanks again, Cathy Anderson andersonfamily77@aol.com