Melia Lively wants to raise awareness of epilepsy even if she has to do it one ribbon at a time.
The 12-year-old Family Community Christian School student is selling her homemade purple ribbons in hopes of garnering at least $500 for the Epilepsy Foundation of Louisiana. The ribbons are $1 each and Melia hopes she has an increase in sales with November being Epilepsy Awareness Month.
Along with the ribbons, Melia has sold lemonade, tea and cookies to raise funds in the summer.
“I’ve sold lemonade two times, and this weekend, I sold ribbons on ‘Found On 15,’” Melia said.
Melia knows personally the struggles of living with epilepsy. At eight years old, she was diagnosed with erratic epilepsy but has been suffering with seizures since she was two years old. In erratic epilepsy, the person does not “fit a typical pattern,” Melissa Lively, her mother, said.
“At first, the doctors thought (Melia’s symptoms) were behavior related,” Melissa said. “After nine months of searching, she was diagnosed with (epilepsy) after an Electroencephalogram (EEG). Seven minutes is all it took (for a diagnosis) with this test.”
Epilepsy is a neurological disorder caused by unusual nerve cell activity in the brain and is the fourth most common neurological disease after migraines, stroke and Alzheimer’s.
In the majority of patient’s, the cause of their epilepsy is unknown, but when known, the four most common are head trauma, stroke, brain tumor and brain infection.
Seizures are a major symptom of epilepsy. When a person has a seizure, they may stare blankly, have a loss of awareness or uncontrollable twitching. Some seizures can be milder than others, but even minor seizures can be dangerous if they occur during activities like swimming or driving.
In Melia’s case, there are certain triggers that may bring on a seizure such as strobing lights, loudness and stress. Many times when Melia comes out of a seizure, she can not read or write and suffers from confusion.
“It is scary when I have a seizure,” Melia said.
Along with seizures, Melissa and Melia often battle with the lack of knowledge about epilepsy.
“It is truly one of the most underfunded disorders out there,” Melissa said. “In America, we spend more money on learning how to quit smoking than we do on epilepsy. One-third of people with epilepsy deal with uncontrollable seizures because there is no money to control it.”
Each year, some 150,000 Americans are diagnosed with epilepsy, according to numbers from the American Epilepsy Society. Over a lifetime, one in 26 people will be diagnosed with the disease.
The closest epilepsy support groups are in Baton Rouge and New Orleans, but Melissa and Melia hope one day a group is formed in northeast Louisiana.
“During this process, we have found out a lot of people in our community have epilepsy and have been affected by epilepsy,” Melissa said.
For more information on how to purchase a ribbon e-mail firstname.lastname@example.org.