In loving memory of Koraley Orritt, who's life was taken too soon.
In November 2016, my mom was was diagnosed with Creutzfeldt-Jakob disease (CJD) a rare, inherited, and devastating prion disease that attacks the brain.
By June 2017, she was gone.
We grew up in a large family. 7 siblings.
This fast acting and sudden degrade in health which ultimately lead to her passing, was the most unimaginable loss that we as a family had and still continue to carry the weight of. However, it was with her passing that through genetic and a deeper exploration of this genetic disease, that we too were witnessing the beginning of a generational battle.
Since mom's passing, it has been learned that this disease had already made roots in our family tree.
Starting with her mother before her, CJD had already established its part in our bloodline. My maternal grandmother, my mom, and her only two siblings —My aunt and uncle. All 4 whom have passed.
Today, the heartbreak continues as members of my own generation, including my cousins and now several of my own siblings, have tested positive for the same inherited gene mutation.
This disease has not stopped taking from our family, and unless research changes its course, it will continue threatening future generations including all the children — My nieces and nephews who haven't even had the opportunity to experience life to their fullest yet, carry the same coin flip.
Familial CJD is caused by an inherited mutation in the PRNP gene. It is one of the rarest neurodegenerative diseases in the world, yet for families who carry this mutation, its impact is immeasurable. Every child of someone with the mutation has a 50% chance of inheriting it.
There is currently no cure, no treatment that can stop its progression, and no way to reverse the damage once symptoms begin. For my mom, it was 6 months.
Behind every diagnosis is a family forced to live with impossible questions, unimaginable fear, and profound loss.
This foundation exists to change that.
My mission is to raise awareness of familial CJD, work towards funding groundbreaking research toward effective treatments, support genetic research, and provide resources and education, while continuing to bring hope to families who are facing the same devastating journey.
No family should ever have to navigate this disease alone.
Through this forever fight, I believe in something greater than what medicine alone can provide.
I believe in a God who heals.
I pray for His hand to move through the hearts and minds of researchers, physicians, scientists, caregivers, and families. I pray for wisdom, breakthroughs, strength, and comfort. I believe that even in the darkest moments, hope remains, and that every discovery begins with someone refusing to give up.
For mom, faith was her foundation.
This is more than a cause to me.
It is our mother.
It is our family.
It is our future.
It is faith in knowing God prevails.
On behalf of my family, I will continue fighting in honor of those we have lost, alongside those still living with the weight of this inherited disease, for friends I have met and loved along the way also grieving for their own losses, and for all the generations yet to come.
Family should never inherit heartbreak.
#BrushstrokesForHope #ForMom