Natalie’s Story: My daughter’s epilepsy story

Back in 2007, my 11-year-old daughter Natalie was diagnosed with epilepsy. At the time, both Natalie and I were in uncharted territory.

At the start of her sixth grade year, Natalie lost her ability to sit up and perform normal school functions. She was complaining of severe stomach pain that required several trips to the hospital for treatment. My daughter started with epilepsy, met with breakthrough problems, was downgraded from epilepsy to epilepsy with heart control, and now is in a state of remission.

What led to these events is a beautiful story that starts with Natalie’s uncle. His death in 2003 sent my husband and me into a tailspin. We were forced to confront how we were going to provide for Natalie’s future. She was diagnosed with another seizure disorder, joined the military and was at the threshold of becoming a teenager.

You would think I would have found a cure for epilepsy when it began in our home, but our journey would take me to the darkest depths of grief.

After my husband and I were assured Natalie would never be in danger, we decided to explore what Natalie’s future may look like, both academically and physically. So, we set out on a mission, visiting colleges along the way and putting ourselves through the paces of standardized tests.

We were told over and over again that what Natalie needed was an individualized education plan, and the school would take care of everything else. This experience gave Natalie the opportunity to explore her options. Soon after, we discovered an incredible program called Epilepsy in the Schools.

The volunteers and staff from this foundation ensure that students with epilepsy are given the best education possible, which allows students to achieve their full potential in academics and the arts.

The Epilepsy in the Schools program is dedicated to making autism, ADHD, ADHD, bipolar disorder, and other learning disabilities like epilepsy a separate learning issue with individualized treatment plans, with academic support for students living with these disorders. In short, the plan works to help students that have conditions for which there are no treatments. It is valuable to know that children living with epilepsy will be able to succeed in school without fear of seizures or other consequences.

In June 2016, Natalie was officially diagnosed with epilepsy and also with a secondary seizure disorder that has caused life-threatening issues. This seizure disorder came at a difficult time and required spending countless hours in hospital emergency rooms. Along with dealing with her seizures and type 1 diabetes, Natalie entered college without a consistent plan for her future.

The Epilepsy in the Schools program was an incredible benefit to our family. The foundation has helped this daughter to learn about her seizures and the symptoms she is currently experiencing. It has also enabled her to navigate the educational system. As her vision and hearing were deteriorating and she came closer to having a permanent hearing impairment, the Epilepsy in the Schools plan could not be more important.

Her diagnosis has set her course for a bright future. The Epilepsy in the Schools program helped Natalie create her own epilepsy plan that involves completing an individualized education plan, attending four-year colleges, obtaining a driver’s license, getting a Social Security card, and attending college.

My daughter is proof that educating children living with epilepsy and other learning disabilities about their conditions and about treatments is not just a matter of filling in the paperwork and sending it to school. If she had not gone through the foundation, Natalie would have continued living with her seizures.

Not all children with epilepsy will be successful, but I am extremely hopeful that others will see this as an opportunity to help their children live a full and complete life.

Marilyn Cole, a mother of three and grandmother of 10, lives in Tucson, Arizona. She is a radio and TV show host and the author of “The Truth About Natalie.”

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