Another one of our amazing Warrior Ambassador Families:
Steve & Jeanette
Destiny Age 20
Faith Age 17
Hope Age 9
Grace age 12
Grace Johnson was born on April 18th, 2004 in 2007 at the age of 3 she was diagnosed with epilepsy. She was diagnosed with Absence, refractory, intractable epilepsy.
Absence Seizures: Absence seizures are brief episodes of staring or daydreaming. During the seizure, awareness and responsiveness are impaired. People who have them usually don’t realize when they’ve had one. There is no warning before a seizure, and the person is completely alert immediately afterward. During this seizure, the person may blink their eyes rapidly, pick at clothing, smack their lips, or swallow frequently. These seizures typically last anywhere from 3 to 20 seconds and can occur up to several hundred times a day. This type of seizure usually begins in childhood between the ages of 4 and 12.
Refractory or Drug Resistant Epilepsy: Drug-resistant epilepsy occurs when a person has failed to become (and stay) seizure free with adequate trials of two seizure medications (called AEDs). These seizure medications must have been chosen appropriately for the person’s seizure type, tolerated by the person, and tried alone or together with other seizure medications.
Intractable Epilepsy: Intractable epilepsy is a seizure disorder in which a patient’s seizures fail to come under control with treatment. These seizures are sometimes also called “uncontrolled” or “refractory.” Frequently intractable epilepsy interferes with a patient’s quality of life. People who are not seizure-free need to be careful about possible accidents during a seizure. Patients with intractable epilepsy need to take caution while in water, near busy streets or railway platforms and often are unable to drive.
Financially we struggle as the kids want to be a part of school activities and we just can’t afford them. We spend roughly $1600 a month just for meds and Doctors appointments. I always make sure we have food and a roof over our heads before anything else. What I wish advocated most about epilepsy is how to react to seizures and treat people with epilepsy.
We as a family talk about epilepsy all the time, we always make Grace feel like she is no different than anybody else. I would like to see everyone talk freely about epilepsy and treat anyone with epilepsy or any disability with respect and dignity. We are pushing hard in our own community to get the word out n epilepsy. My family is strong and so very supportive but we could do so much more if we had a little help. Our other children often wish they could have a little help towards school tuitions, school sports fees, and equipment.
If you would like to help us or any of the Ambassador Warrior families chosen through the Epilepsy Warriors Foundations Ambassador Program you can do so through this website. Thank you for your support, understanding towards all of us.