#SEBfamilyStory: Izzy Mejia

by: britt renee'

I recently had the unique pleasure of visiting with Isabelle "Izzy" Mejia, a founding member of Spoonie Essentials Box. Izzy is a sophomore at Arlington High School in Riverside, California. Izzy has Lupus, Juveniles Arthritis, and Sjogren's Syndrome. 

Izzy, her mom Elaine, and I talked for about 4 hours on Sunday evening. I couldn't help but be in awe of Izzy, she is an amazing intelligent, funny, and unbelievably kind young person. We talked of our shared experiences with “Fighting the Wolf” aka Lupus, a phrase Izzy coined herself because the “butterfly” analogy just wasn’t her thing. Izzy reminds me of a person much older than herself, I suppose this is likely another byproduct of living with a chronic illness at such a young age. You are forced to mature before you’re ready because the management of chronic illness thrust important life decisions into your lap long before you fully understand what they mean. 

Izzy’s mom Elaine, tearfully recalled sharing with her daughter when she was just 10 years old that she was indeed “forever sick”. Elaine said “it was the hardest thing I ever had to do, tell my daughter that she was never getting better. But I told her I would be here every step of the way”. I couldn’t help but cry myself. I couldn’t imagine weighing the severity of my child’s illness against preserving her innocence. Elaine shared with me that many cases of childhood Lupus succumb to kidney failure which leads to death, her greatest fear. 

Elaine has chosen to work part time to ensure she is able to be a full time mom and caregiver to Izzy. We talked about the financial strain of chronic illness, making choices between household bills and Izzy’s medical expenses. As a chronic illness patient myself, I know all too well about $50 copays methotrexate and $10,000 weekly to monthly infusion price-tags. We laughed at the many contradictions in receiving government assistance, “you have to be poorer” we laughed, knowing all too well what we do have is hardly enough. 

I learned of her struggle for visibility and accommodations at Arlington High School. Unfortunately Izzy’s faculty and staff like many people are who do not personally experience the effects of chronic illness, do not understand her battles. Izzy’s school does not understand her need for breaks, perpetual absence, or more time to complete her work. Elaine, her mother, has met with Arlington’s administration to no avail because they don’t understand Izzy spends her days at home resting, taking medications, and being cared for by her mom and grandma. 

Izzy is facing what many of us in the chronic illness community experience, cynicism and disbelief. However, instead of criticizing Arlington High School we must take this opportunity to #Educate2Advocate for every chronically ill student around the world. 

We need more educators, more people, to understand being chronically ill isn’t predictable and traditional approaches to education simply do not offer chronic illness students the accommodations they need in order to be successful in the American school system. Help Izzy advocate by writing Riverside Unified School District here or calling (951) 788-7131. The Superintendent's name is Dr. David Hansen.

While Izzy is currently facing immense challenges to receive the educational accommodations she deserves, Izzy has such a positive and upbeat outlook on her life. Izzy says she wants to be a photographer when she grows up and wants to help other teens fighting chronic-illness in the Inland Empire by creating support groups and documenting her travails. 

To learn more about Izzy and continue following her story, follow her on Instagram by clicking--> @LupieGirl11.

*Images courtesy of Jerome Riddeaux & Izzy (@lupiegirl11) Instagram