At Momentum Early Learning family is important to us. Whether it’s the families who bring their children to Momentum, or the families who support our wonderful teachers, we simply cannot put a value on their worth. CJD (Creutzfeldt-Jakob Disease), sadly took a family member from one of our beloved teachers at our Sussex location. Ms. Ashley is passionate about sharing her family’s story and wants to spread awareness of this devastating disease.
What is CJD?
Creutzfeldt-Jakob (KROITS-felt YAH-kobe) disease is a degenerative brain disorder (a human prion Disease) that leads to dementia and, ultimately, death. Symptoms of Creutzfeldt-Jakob disease (CJD) can resemble those of other dementia-like brain disorders, such as Alzheimer’s. However, Creutzfeldt-Jakob disease usually progresses much more rapidly. The condition causes personality changes, anxiety, depression, and memory loss, usually within a few months. Many people lapse into coma. Some people can live with CJD for up to a year, others only live weeks to months until they pass away. Unfortunately, with every CJD diagnosis, it is always fatal.
Creutzfeldt-Jakob disease may occur spontaneously, be inherited, or be transmitted by contact with infected tissue, such as during a transplant or from eating contaminated meat. My mom had Sporadic CJD which means doctors don’t know why or how she got it. Luckily for my family, it does not run in our genetics. Treatment consists of supportive care, because no effective treatment exists, the focus is on alleviating pain and relieving symptoms.
About my Mom, Aimee
My mom was the most wonderful person I have ever met. She was my absolute best friend. My mom loved life and the most important people in her life were her family; especially her three kids. Everything she did, she did for us. She was the most selfless person I knew. She would go out of her way for anyone if it meant she could help them in any way. My mom loved making people happy anyway she could. I have such amazing memories of my mom and for that I am forever grateful. My mom was only on this earth for 52 years but she really touched so many lives in that short time. I was lucky to have known her for 24 of those years and my heart aches every day that goes by without her physically here with me. CJD took my mom’s physical self away from me and my family but it will never be able to take away our wonderful memories we have of her and the people we have become today because of her.
We watched my mom suffer horrendously with CJD for 54 days before it ultimately took her life. It was the worst thing I have ever experienced and it has changed me forever. I have never known a loss so horrible as the loss of my mom. I’m writing about this today because CJD is so very rare and many people do not know about it; it needs to be talked about. Research needs to happen to help find a cure for this monstrous disease. I don’t ever want another family to go through what my family went through. Unfortunately, even though it is rare, people are dealing with this every day. And scary enough, other than my own mom, I know two other people who have passed away from CJD even though it’s supposed to be a one in a million disease.
How CJD Affected my Family
With loss and suffering comes grief. I have never experienced grief quite like this ever before. I learned quickly that it is okay to not be okay. Sometimes you need to cry. Sometimes you need to spend a night at your sister’s house to laugh and cry on and off. Sometimes you need to be by yourself and not say anything to anyone. Sometimes you get angry and ask yourself why this happened to you. My mom passed away on Christmas Eve of 2016. I am writing this nearly two years since that day, and I am finally just now coming to peace with things. I know in my heart that my mom didn’t actually leave me. She left physically but I still feel her with me all the time. Telling me to relax and laugh at myself when I’m feeling frustrated. I feel her telling me to lighten up and stop taking things so seriously. Don’t get me wrong, I still cry once in a while, I still get sad and feel lost. I think I will always grieve the loss of my mom but I’m learning how to live with it.
I’ve had an amazing support system including my dad, step mom, siblings, my amazing husband and in-law’s. I couldn’t have made it through any of it without them. I never thought I could live without my mom but little did I know, she prepared me to be strong like her. Going through something like this as a family was tragic but it has also made us stronger as a whole. It has made us really cherish family time even more than we did before. The bond between my family has always been strong but we are even stronger now.
Living My Mom’s Legacy
As I mentioned before, my mom was so kind and considerate to other people. She literally brought so much joy to everyone she knew. That is how I remember her. That is how I want other people to remember her. Every day I try to do at least one thing in honor of my mom to make someone else’s day. Whether that is a simple compliment, paying for the person’s coffee behind me in the drive thru at Starbucks, offering a helping hand to someone in need, or just smiling at someone as they walk by. A little kindness can go a long way and sometimes a simple smile can mean the world to someone. My mom always “paid it forward” and I try to do the same every day.
What you can do to help?
Spread awareness! Wear purple on November 12! Like CJD awareness pages on Facebook. Visit the CJD Foundation website (www.cjdfoundation.org) for more information and other ways you can donate and/or volunteer! If you order items from amazon, you can go to smile.amazon.com and select the CJD Foundation for the charity that amazon will donate to with every purchase.
Thank you so much for taking the time to read about my mom and Creutzfeldt-Jakob Disease. I appreciate it more than you know.