A Diagnosis

My daughter Jamie was diagnosed with epilepsy when she was 13. One morning, while getting ready for school, she suddenly had a tonic-clonic seizure. We prayed that it was an isolated incident, but then she kept having one seizure after another. That’s when Jamie was diagnosed with epilepsy.

It took some time to find the combination of medicines that were right for Jamie. A certain medicine would seem to work, but later on it wouldn’t. Thankfully, Jamie had an extraordinary pediatric neurologist who carried her through this tough period. He assured her having epilepsy would never stop her from living a full life and following her dreams. He was right.

The Importance of Support

Although her seizures were never fully controlled, the support of her doctors, teachers, friends and family made Jamie’s seizures only a small part of her life. She sailed through high school, performing in all the school plays, singing, dancing, and acting her heart out.

When she was 18, she left home to attend college. Though I was nervous as her mother, I was proud of what Jamie had accomplished despite her diagnosis. After college, she moved to Florida to earn her Master’s degree in Family Therapy. Since her seizures were still active, she joined an online support group for young adults with epilepsy. Her support group helped her keep everything in perspective and continue on in her life. She never let her epilepsy hold her back. She loved what she did and she loved her life in Florida. Always helping others, Jamie interned at a homeless shelter and worked with a therapy group for foster families.

Remembering Jamie

One month before finishing her degree, Jamie passed away from injuries that resulted from a seizure. We lost a beloved daughter and the world lost a talented and compassionate therapist and person.

Now, volunteering at the Epilepsy Foundation Central & South Texas gives me an opportunity to honor Jamie and all the people who helped her on her journey. I am learning so much about how this organization is saving lives and making a true difference for many families. I’m honored to be a part of the Epilepsy Foundation as a volunteer. Someday, I wish to see a world without epilepsy.

“Today is purple day! And no, not wildcat purple, but epilepsy awareness purple! Many of y’all know that epilepsy has been something I’ve carried with me for many years. Although it isn’t something that I believe makes up my whole story, it has definitely influenced who I am and how I see the world. There have been many difficult, heartbreaking days, but the fact that I wake up every morning alive is a gift and makes many days really wonderful.

But this post isn’t just about me. I want to take time to praise my family, friends, teachers, professors, therapists, and doctors who have been active participants in my story. Y’all don’t know how grateful I am that you didn’t see it as scary, burdensome, or helpless. Y’all each used words and actions to write unforgettable messages that gave me courage and resiliency. Y’all are the reason I wear purple today! #purpleday”

Jamie Marie Calomeni (August 10, 1994-April 8, 2019
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