The joy of watching my daughter learn how to be her own advocate

I'm proud of my teen with NMOSD for speaking up about her needs

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by Candice Galvan |

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2023 was an incredible year for my family and me, full of growth, learning opportunities, job promotions, travel, mostly good health, and advocacy. At the beginning of last year, I set a goal to use my voice and spent the year advocating for my 15-year-old daughter, Bella, and everyone else with neuromyelitis optica spectrum disorder (NMOSD).

Last year was particularly successful for Bella, both in and out of school. She continues to thrive in her high school choir, which offers her an escape, a judgment-free safe space where she can be herself. In addition, Bella became a junior police cadet with our local police department.

I was beaming with pride at her cadet graduation because of her determination to complete the program and represent the police department. Although Bella couldn’t attend class some days because she was sick, she knew exactly how to advocate for herself. She’d call the police commander and explain that she was unable to attend class due to her autoimmune disease, and that she needed to listen to her body.

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Access to care and health equity are crucial for all NMOSD patients

No limits

Words cannot express the reassurance, pride, and joy I feel watching Bella advocate for herself, her health, and her needs. These things are essential as Bella completes school, becomes independent, and enters the workforce.

Since Bella was diagnosed with NMOSD in 2017, I have worked hard to show her that there are no limits to what she can do. Bella isn’t sure if she wants to pursue a career in the police department, but she does want to serve the community — perhaps as a firefighter or an emergency medical technician — and have a side hustle as a dog trainer. I have no doubt that she will be the best at whatever she chooses to do.

I’m also appreciative of our local police department and the support they offer to Bella and our community. It’s comforting to know that Bella is now aware of the accommodations she’ll need from a future employer, and that she has the tools, information, and knowledge to advocate for herself when needed.

Despite all the ups, downs, and loops we’ve been through with Bella’s NMOSD, we have remained strong in love, family, connection, and advocacy. Connecting with others on a similar journey has been an unexpected blessing, and I’m grateful we’ve learned never to give up on ourselves; where there’s a will, there’s a way.

It’s a joy to be Bella’s mom and to consider my daughter as my hero.

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).


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