Raising Awareness for My Daughter and Others With NMO

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 Oregon, Washington, and Wyoming. I am happy to report that as of last week, we have received proclamations from three of those four states, including Colorado. Of all 50 states we approached, 11 have proclaimed March as NMOSD Awareness Month.

Next week, I will have the opportunity to tell the neuromyelitis optica (NMO) story of my 13-year-old daughter, Bella, during a live storytelling event. Bella and I will also be doing an interview with a local news station to tell her story and further our awareness campaign for neuromyelitis optica spectrum disorder, or NMOSD. This will be her first TV interview and her first time speaking about her journey with NMO. Her neurologist has even agreed to participate.

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I am most excited for late March. That’s when Bella and I will take an early flight to Boston to attend the Sumaira Foundation’s 5th Annual NMO Awareness Gala on March 26. She will be one of many NMO patients attending. The foundation has worked to make the evening even more special for NMO patients by designating them as the gala’s guests of honor. The theme is Old Hollywood, which has Bella and I channeling our inner Gatsby and Audrey Hepburn vibes.

The gala’s sense of community is what we’re most anticipating. Having a rare disease and being a teenager has been difficult for my daughter, but she is so strong and so brave. I am excited for her to have a weekend full of fun, laughter, adventure, and priceless memories.

Our trip to Boston will be the first time we have traveled during the pandemic. Although I am nervous to travel with my immunocompromised daughter, I have complete confidence she will remain healthy thanks to her COVID-19 vaccines and booster.

A few days ago, I was able to take a break and reflect on all of the things I have accomplished in just the first two months of this year while working to raise awareness for NMOSD. While I was considering that and trying to organize my schedule, I heard the loudest laugh from my Bella. She was playing video games online with her friends and having the best time. I had to chuckle a little myself at how much fun they were having, and I was just a bit jealous I wasn’t part of the laughter, too.

In that moment of reflection and laughter, I was grateful for the advocacy that I’m doing on my daughter’s behalf. I realized for the first time in a long time that I have begun to pave a path of awareness and advocacy for her while she is busy living the life of a carefree teenager with her friends, laughing and having fun, just as it should be. Of course, I share all of my accomplishments with Bella, and even though she doesn’t completely understand all I do for NMO, she is always grateful.

Although this journey is not always easy, seeing Bella smile, hearing her carefree laughter, and knowing she is happy makes all the advocacy work I am doing for her and other NMO patients worth it. I am raising my voice and raising awareness for NMO and my sweet, brave, and courageous daughter.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).