Share Your Story with the Epilepsy Community:

Epilepsy can be challenging. The Epilepsy Foundation believes that it is important to celebrate success and positivity in the epilepsy community. If you would like to share you or a loved one's story, please reach out to aedwards@efa.org to send your submission. Feel free to include a photo with your submission if you are comfortable with sharing. We will then share select stories here and on social media to share your journey to support others.

Jess Hooker - Addi's Story

The cluster started around 10pm. A seizure every hour, on the hour. After the first five seizures I administered one of her emergency medicines, diastat. Diastat is a rectal valium that sometimes works and sometimes doesn’t. This time it didn’t. The seizures continued through the night. She woke up on her own. She couldn’t talk. She couldn’t remember how to put on her pants. But she was still making an attempt and I followed her lead. I continuously wiped the drool from her chin and redirected her when she forgot what she was doing. Everything took twice as long. She was late to school that morning and barely made it in time for pictures. I remember thinking, “we’ll just get retakes.”
A few weeks after, I pulled the picture envelope from her backpack. I took a deep breath and this is what I found. My beautiful Addi. As her mom, I see the night before. The remnants of a restless night. The things you can’t see. The battle she fights everyday. The effects can outweigh the activity itself. Addi will be nonverbal, confused, fatigued, and irritable for days following seizure activity.
In many ways epilepsy is an invisible condition. The effects on the body and mind can’t be seen by the untrained eye. The effects on parents, family, and caregivers go unnoticed from passersby. Be tender and patient. Extend grace and mercy wherever you can. For everyone you meet is fighting a battle you know nothing about.

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Tim Chaffee - Sharing His Son's Story 

Seizures blindsided our family after our oldest child faced a second surgery to remove a cancerous brain tumor.  This was a second blow to an already devastating cancer diagnosis.  The feeling of utter helplessness was paralyzing for parents whose very nature is to protect their children.  The waiting for, and not knowing when, the next seizure would strike was agonizing and robbed us of the joy of living in the moment.  However, for us, our hope has been restored through achieving freedom from seizures.

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Jane Meehan - Frank's Story

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Frank was Indiana’s #1 Patriots fan!  He played tennis on his high school team and loved working on cars. His positive empathetic attitude, his determination, and will to succeed helped him fight through his struggles with epilepsy.   Frank looked at every day as a gift and was always looking for ways to make others smile.   

Emily Gowgiel - Her Journey with Epilepsy

My name is Emily Gowgiel. I had my 1st seizure at the age of 5. I was in the bathtub. My mom, a R.N., noticed the signs and saved me from drowning. I started having regular seizures at the age of 10, entering puberty. I have complex partial seizures. They mainly consist of staring, lip smacking, and jumping up and down. They usually happen once a month or once a week. I have tried  almost every seizure medicine. I have gained weight, lost weight, had swollen lips and other physical side affects. I experienced alot of the same things others have. I have been bullied, teased, and experienced alot of the limitations epileptics face. For example, no drivers license, no alcohol, socialization, and many others. I am now 38. I have a husband, a 14 year old daughter, 12 and 11 year old sons. I have been to specialists all over Indiana and Illinois and have experienced many obstacles. I now have my 2nd v.n.s. The 1st v.n.s. was not placed correctly. I am on Lamictal, Neurontin, and a new medication, Briviact. With the combination of the v.n.s and the 3 seizure medications, I have been seizure controlled.  I'm now able to drive, go places, and experience new freedom. I am on disability due to seizures, Fibromyalgia and other medical issues. My triggers are stress, lack of sleep, and getting sick. I am blessed to have my parents, husband, and children in my life. They are always watching over me. They know when I have a seizure and how to use a vns. I am blessed. I hope you become an dvocate for those with Epilepsy/seizures and their loved ones.

 

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Kelly - Sharing her Son's Story

Please join your local walk for the Epilepsy Foundation of Indiana! The funds raised from the walk provide programs and resources that help those living with epilepsy and their families, like my son, Caleb. Caleb was diagnosed with epilepsy at 5 years old. During his fight against epilepsy, he has gone through several different medications, hospital stays, tests, surgery, ketogenic diet, and missed out on fun activities and school. Caleb is now 11 years old and is in the 5th grade. He enjoys art therapy, CCK Camp, and support given through the Epilepsy Foundation of Indiana. Without the funds raised for the Epilepsy Foundation, Caleb would not be given these opportunities, and our family would not be given the support we need. The Epilepsy Foundation allowed us to connect with others who are also in this fight and helped us discover other avenues into getting Caleb’s seizures under control. Please consider forming or joining a team to help those living with epilepsy! If you would like to join your local walk in the state, please visit here to register:

https://www.epilepsy.com/local/indiana/walks

 

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Seizure Free Anniversary 

Logan is celebrating 2 years of seizure freedom today, August 27th, 2019!

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