Ella Mooers didn't set out to be a crusader but now the Sherwood Middle School seventh-grader proudly carries that banner as she works to educate those around her about epilepsy.
Ella, the daughter of Kim and Ralph Mooers, was diagnosed with epilepsy when she was 8 years old.
"Every day Ella battles her seizures and medication effects while continuing to go to school, play soccer and dance," Kim said. "She is on three different medications and without them would be having grand mal seizures every couple hours.
"For the longest time, Ella wanted to keep her epilepsy a secret – she felt different. Now her body is going through so much medically, and it is difficult to hide that from her peers and teachers. What makes Ella amazing is her ability to go through each and every day like she is any other normal kid, all while she is raising awareness and taking the lead about epilepsy at her school."
Ella has discussed with teachers, the district nurse, counselors, principals and administrators the importance of making simple changes and adjustments in procedures, including medication protocols, to make life easier for her and others with medical needs while at school.
"She wants people to know that living with epilepsy, or any medical crisis for that matter, is hard, but simple changes and awareness can make a huge difference in one's life," Kim said.
Looking back, the family remembers what was probably the first evidence of a problem: Ella, who attended St. Francis School through the second grade, fell in the bleachers at a Christmas program.
That normally wouldn't have been a cause for concern, but then Ella started having dizzy spells, "and three months later she had a grand mal seizure in bed," Kim said. "She started having up to 30 seizures a day, and she was allergic to most of the medications we tried, so we tutored her at home for the rest of the school year."
Ella, who switched to Archer Glen Elementary the next fall, added, "My seizures were bad enough, but my reaction to the medications was worse. If the medications were being changed, they would have to wean me off one while introducing a new one. It was a long process."
In a recent open letter to her school, Ella wrote, "Now with my meds, when I am having a seizure, I feel an aura like it is about to happen. Then I might either drop a bit if standing and black out for a few seconds or I might feel extreme pulsing in my brain. I can usually talk through these, but that makes me feel worse, plus light- and sound-sensitive.
"These last sometimes 30 minutes. I try to act like nothing is happening when really I feel angry and mad that my brain is doing this to me. I just want to be a teenager and sometimes feel like this gets in my way."
Finally, a combination of three medications gave Ella two seizure-free years, but then two years ago she relapsed.
The family decided to switch doctors and went to Oregon Health & Science University/Doernbecher Children's Hospital, where during the second week in February this year, Ella was hospitalized for a week and taken off all her meds to try and pinpoint the exact type of epilepsy she has. Ella was finally diagnosed with rare parietal lobe epilepsy, which is in the part of the brain that controls senses and focus, and is difficult to treat.
In May she will return to the hospital for further testing that includes injecting radioactive dye into her brain.
The entire family is impressed with OHSU/Doernbecher, which is one of only three hospitals in the country capable of the advanced testing and treatment that Ella needs.
"They just grabbed hold of us and are taking care of us," Kim said. "The doctors are intrigued by her."
Before Ella's February hospital stay, she didn't want to talk publicly about her epilepsy but that changed after she was back home.
"The medication that I take makes me tired and unfocused as well," Ella wrote in her open letter. "I take three different medications because my body is resistant to most meds. Without the meds, I would be having a grand mal seizure every couple hours.
"My doctors are currently working to try and locate the exact location where they think my seizures are starting so they can surgically remove that 'spot' of my brain. What that means is a lot of tests, scans and hospital stays that put my body through a lot."
Ella added that she is tired all the time and gets frustrated, especially on days when she has several seizures. "I have learned to really appreciate the moments I feel really good," she wrote.
Her dad Ralph added, "We are so happy if she gets through a day without a seizure, but usually there are several a day."
Ella continued, "I want people to know that living with epilepsy is really hard. I need help from most people in my life at unexpected times but then can and do most other things on my own when I feel good. I try to be active at home like any other kids my age. I love my friends and my normal days at school."
Everyone in Ella's life wears bracelets that read "Ella Strong," and she continues to persevere in her efforts to educate those around her about how they can help her and others in similar situations, including setting up a training with a paramedic on how to help someone having a seizure.
"It's made me feel safer," Ella said. "I'm never wandering the halls alone – I'm always with someone at school."
Kim noted that "her life is very different from a kid without epilepsy, but she doesn't know any different. Bells ringing at school can set off a seizure, and she can't do scary Halloween things. She is pretty amazing – she is the strongest girl I know. I was proud of her when she went from not talking about it to wanting to help people in the future."
And Ella wants to remain a good student, with Kim noting, "She's an over-achiever and wants to do her very best. I try to tell her to relax," but Ella said, "It stresses me out when I get a B."
The testing Ella will undergo in May will be pretty invasive, but if all goes well and her doctors feel confident they can perform successful surgery on her, it would probably be done this summer, followed by a three- to six-month recovery period.
Ella's best friends, Olivia Jakubowski and Hailey Taylor, have been with her every step of the way, came to see her in the hospital and help her stay in touch with her other friends at school when she isn't there.
When someone asked Ella after her February hospital stay, "Did they fix you?" she answered, "I'm not broken."