My Growth in Advocacy, an Unknown and Unexpected Journey
What I've learned about the importance of advocacy as I've spent years doing it
Advocacy is the action of advocating, pleading for, or supporting a cause or proposal. I’m a firm believer that we’ve all been an advocate or benefited from advocacy at least once in our lives.
Personally, I’ve been able to experience the blessing of both having an advocate and working to advocate for others. The most important advocacy role that I have is being a mom to my three kids, Estrella, Elijah, and Bella, who was diagnosed with neuromyelitis optica (NMO) in 2017, when she was only 9 years old.
I’ve always enjoyed helping others and receiving support when I’ve needed it the most. When I was younger, I helped new students make friends in elementary school. In high school, I talked to teachers about extending my project due dates because I had a full-time job and a new baby when I was 16. Through the years, I’ve learned there is power in using my voice.
My becoming an advocate in a medical setting was a completely unknown and unexpected journey that began when Bella suffered her one and only NMO attack in 2017. Her illness began with flulike symptoms that progressed in just a few days to her losing the ability to talk, walk, swallow, and even breathe.
It took four trips to the doctor and two emergency room visits before Bella was admitted to the hospital, where she could be observed and tested to learn the reason she was so sick. It took another two weeks to finally get a diagnosis of NMO.
During the time Bella was hospitalized, sleep was hardly an option for me, as I was busy researching NMO and the impact it would have on my daughter and her life moving forward. I learned that NMO can at times be considered an invisible illness, so learning how to properly advocate for care is key.
I also learned that, because NMO is a rare disease, and is even rarer in children, I had to connect with others on this journey with us. I turned to social media and began finding support pages and foundations, such as the Guthy-Jackson Charitable Foundation and the Sumaira Foundation for NMOSD/MOGAD (myelin oligodendrocyte glycoprotein antibody-associated disease). I began to connect with other patients, and through those connections, I learned how to recognize the symptoms Bella was experiencing and how to advocate for her care.
Becoming an advocate for Bella at school was another learning experience. Due to the twice-yearly Rituxan (rituximab) infusions, monthly IVIG infusions, doctor appointments, and illnesses and hospitalizations, Bella misses school more than most of her peers. She also has a traumatic brain injury due to the lesions on her brain stem, which causes her to struggle with short-term memory and decision-making.
When Bella returned to school after being in the hospital, I made sure to meet with school administrators to come up with a medical plan for her, along with support while she was in school. Setting up that support has been one of the most challenging parts of our journey with NMO for many reasons. For instance, we didn’t know when a relapse was going to happen, and we had to ensure Bella didn’t fall behind in school when she was out.
Although I’ve faced challenges while advocating for Bella’s education, I’m grateful she’s always had a great team of educators and supporters to help her through elementary and middle school. I’m also grateful for the teacher support she’s now receiving in her first year of high school.
As I reflect on my journey as a mom, caregiver, and advocate the past five years, I feel proud of how far we’ve come and all that I’ve been able to learn and accomplish, not only for Bella, but also for others in the NMO community. I’m inspired by the many advocates in my life who’ve helped us along the way and look forward to continuing my role as an advocate.
While I’ve learned a lot about advocacy and advocating for others, I’m not the only one. Bella has learned the power of her voice and how to advocate for herself and others. Whether it be getting a countdown from the nurse when starting an IV, asking for help with homework, stopping to take a break during or after a walk, or recognizing when a friend needs support, Bella is learning the importance of advocacy.
It’s my biggest desire that by advocating for her needs, Bella will be successful in anything she chooses to do.
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).