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Evannie’s NMO Story – You Never Know

Posted by: The Sumaira Foundation in Caregiver, NMO, Voices of NMO

You never know what someone’s going through.

I have always been told this and I believe it. Still, I never really thought about it until my mom was diagnosed with neuromyelitis optica (NMO).

I have really taken into account how my actions can affect others’ feelings. In the summer of 2023, my mom was diagnosed with NMOSD. I don’t know much about this time because my mom didn’t share much and I didn’t want to accept the fact that she was sick.

Over the next few weeks, my mom started becoming more vocal about it and sharing more with my teammates’ parents, my dad, and the rest of my family. I heard her talking about it with them and I started to learn more.

I didn’t start seeing signs of it until our family vacation began in July. The first time I was with her when she had a symptom was when she was working on her homework for college, and I was watching TV in her room. Her leg started shaking and I asked her about it.

My mom explained that she didn’t have control over her body and that it was a part of her NMO.

Then we went to Florida with my whole family at the beginning of August. My mom has always been sensitive and affected by the heat. This made her symptoms really show. Throughout the trip, she was having trouble walking. My two older brothers and I helped her get from place to place when she really struggled. I remember times when she had to sit out because her eyes were bothering her and she couldn’t see. She told the younger kids that her legs and eyes were acting silly so she wouldn’t scare them. Little did she know that it really scared me.

Having to help your mom and watch her be embarrassed pained me.

My mom is a strong but stubborn person. She won’t ask for help and if someone asks to help her, she will refuse. My mom was told she could not work, so our family was in a tough financial situation. My mom’s co-workers started a GoFundMe fundraiser to help and she refused to take any money that was donated because she didn’t feel like it was a big problem. She hates drawing attention to herself. When we are at my games, she sits far away from everyone to avoid people asking questions.

My mom is a strong person and she won’t let this disease affect her. She continues to go to college during this challenging time and makes it to as many of her kids’ activities as she can.

She’s a mom, a wife, a worker, and a student, all while battling this rare autoimmune disease.

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