Thrilled to introduce you to another of our amazing Warrior Ambassador Families

Trina
Jordan
Hunter Age 15

My Son Hunter was diagnosed with Generalized epilepsy from the frontal lobe at the age of 6.

Frontal Lobe Epilepsy: Frontal Lobe Epilepsy is seizures that originate in the front of the brain. The epilepsy symptoms can vary depending on what part of the brain is involved. Frontal lobe seizures may produce unusual symptoms that can appear to be related to a psychiatric problem or a sleep disorder. Frontal Lobe Seizures often occur during sleep and may feature bicycle pedaling motions and pelvic thrusting. Some people scream profanities or laugh during Frontal Lobe Seizures.

Generalized-Onset Seizures: Generalized-onset seizures have an onset recorded simultaneously in both cerebral hemispheres. Generalized-onset seizures are classified into 6 major categories: (1) absence seizures, (2) tonic seizures, (3) clonic seizures, (4) myoclonic seizures, (5) primary generalized tonic-clonic seizures, and (6) atonic seizures.

Hunter was a happy healthy boy, then at age 3 he began to blink too much. After many specialists and 2 misdiagnosis and 3 yrs later we were told he had epilepsy. His blinking began to change or evolve and over the next several yrs we would find ourselves medicating him more and more, yet nothing seemed to stop the tonic-clonic, tonics, and absence seizures. We agreed to finally get a device implanted in his chest to help with his seizures called the Vagus Nerve Stimulation VNS for short.

The VNS has helped even stopped his tonic clonic. He still has tonic seizures and falls a lot. His falls are very dangerous because he has no warning of seizures coming so he does get injured when he does fall. In Oct of 2015, he fell down the steps into the basement backward from a seizure leaving him with 11 stitches to the back of his head. We were VERY lucky that’s all he had. Epilepsy has taken a huge toll on our lives. Hunter will be 15 in Aug. he has a service dog named Milo. Epilepsy has made its mark on our lives, but we will continue on as epilepsy does not define who we are.

My oldest Son can’t cope with seeing his Brother have seizures and I also suffer from PTSD (undiagnosed) from sudden unexpected events or noises. It affects my health, my work, my sleep. The financial, emotional struggle is real as you need help paying for meds not covered by insurance such as CBD oil, gas money for driving 160 miles to and from your neurologist, Sometimes you just need help to pay off the mounting debt because you can’t work more due to not having enough resources in Illinois to help with in-home care or financially.

I want to see more funding for families affected by epilepsy, for research I want to see that advocated by our local representatives as well as other families speaking out. I would like to see more of our Doctors, Nurses educated on seizures, the meds, and the side effects. I wish Illinois would have a caregiver pay program for parents and all caregivers.

I plan on helping with fundraising whenever possible and to help spread more awareness. Please visit our page Epilepsy Fact Friday’s