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March 25 was a day I won’t soon forget. My 13-year-old daughter, Bella, and I jetted off to Boston to attend The Sumaira Foundation’s 5th Annual NMO Awareness Gala at the Mandarin Oriental Hotel the following day. The trip took a few years of planning and preparation, including surviving…
When I walk through the doors of Satay Sate, a local Indonesian restaurant, the aromas that hit me instantly remind me of my childhood. I first ventured there after my dad died, and I was brought to tears at my first bite. It was like they had stolen Dad’s recipes.
It didn’t start as a windy day. The sun beaming down on my face felt oh so good. Spending time on the water with my family was one of my favorite activities. At first, I thought Dad’s 28-foot boat purchase felt excessive, but when we piled our entire family onto…
People say that dogs are man’s best friend. In our family, Roxy, our 3-year-old Australian ridgeback rescue, is my 13-year-old daughter Bella’s best friend. Bella has always loved animals, which thankfully runs in the family. When she was hospitalized in 2017 due to a major neuromyelitis optica attack, she…
“Can you walk down the hall for me, please?” My specialist, with a stern look on her face, waits patiently. “And back again toward me now.” It feels so ridiculous that, as a 40-year-old woman, I’m being asked to do this. I steady myself and walk down the hallway. I…
I never imagined that a nurse would slap me across my face, but it happened. The slap wasn’t hard — it was just enough to jolt me back to reality, and I was grateful the nurse had done it. About 10 years ago, I was waiting for my cesarean section…
A chronic illness diagnosis can be stressful, overwhelming, and scary, especially when the illness is rare and has no cure. When my daughter Bella was diagnosed with neuromyelitis optica (NMO) in 2017 at age 9, we were instructed by her doctors to spend one hour online learning everything we could…
“Ladies and gentlemen, please welcome to the MRI, all the way from the changing room, the one and only …” I’ve sauntered into the room and grabbed the finger heart rate monitor, only to turn it into a makeshift microphone. The nurse looks at me, clearly unamused. I know…
We cannot separate science from life. Trust me, I’ve tried. Like most young people, I once thought of myself as invincible. So I was absolutely stunned when I was diagnosed with neuromyelitis optica (NMO) at the age of 24. With the diagnosis, my world came crumbling down. Yet while…
Today begins NMOSD Awareness Month, and to say that I have been busy preparing is an understatement. During the past month, in a push to have NMOSD Awareness Month recognized in all 50 U.S. states, I have applied for proclamations in my home state of Colorado, as well as…
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