Nicole
In honor and memory of Nicole*
As a young woman, Nicole worked in real estate and ran maternity stores. She loved exercising and relished the joys and challenges of raising two young children. One morning upon waking, she was unable to empty her bladder, and was rushed to a hospital where she underwent extensive evaluation. She later recognized this as her first attack of a disease related to multiple sclerosis called Neuromyelitis Optica Spectrum Disorder, or NMOSD.
Eventually receiving a diagnosis of the rare disease, NMOSD, shortly after the disease was officially described, led Nicole into uncharted territory. Reflecting on this moment, Nicole said, “In 2005, I was one of the first few people that was able to get the diagnosis of NMO. I’m hopeful that I can be one of the people that could contribute to finding a cure.”
At that time with no clear treatment path or approved therapies, she instead moved her young family to California to carry on in a new environment. The times she spent with her children when they were young were among the happiest of her life.
While research and advancement in NMOSD proceeded, Nicole’s symptoms worsened over two decades, and she struggled to cope with her vision loss and pain. And though her symptoms could not be reversed by the newly available treatments, she found comfort and inspiration in making the arrangements to donate her brain to NMOSD research through the National MS Brain Bank.
When discussing her decision to donate her tissues, Nicole said, “I can make my life have meaning. To me, that’s trying to save other lives.” Nicole and her medical team utilized the Medical Aide in Dying Act to grant her relief from intractable pain.
Nicole said in her final days, “I’m glad that we can see the journey and progression, but I’ve never quite understood how people could find a cure with mice. We need humans for human diseases. That’s what I feel and always felt. I hope that my brain makes a difference. My grandmother used to say if you have your health, you have everything. When you are a little kid, you don’t know what that means. You now have all these rare diseases. NMO, ALS, MS, all… happening to people that are younger. We need to have hospitals that are going to study them. Without these donations, and without the help, it is going to be very very hard to find a cure.”
“I don’t have anything to offer that is going to help anybody, and surviving this disease long term is daunting. So for me, personally, this brings peace. I’m scared, but this is my choice.”
Nicole’s hope was that her donation would lead to the discovery of a cure for NMOSD. Thank you to Nicole for her bravery and candor in discussing her gift to the National MS Brain Bank in the last days of her life.
*Pseudonym at donor’s request
