VIV Moments

Hometown

South Carolina

Joie de VIVre

Mothering two beautiful children: a 9-year-old daughter and a 3-year-old son

VIV Moment

When I gave birth nine years ago to my beautiful little girl Taylor, everything was just perfect. Approximately one month after her first birthday party, however, my life — along with my daughter’s — changed forever when Taylor had her first grand mal seizure. Prior to this day I never really knew what a seizure was nor had I ever seen one. It was terrifying. I did not know what was happening to my baby. I called 911 and an ambulance arrived and it was then that I learned that my baby was having a seizure. I was beside myself in disbelief. One month late, my daughter was diagnosed with epilepsy.

Everything just got worse and worse from that day on. Taylor had seizure after seizure. I took her to see many different doctors and she tried several different medications. We had no success with controlling the seizures. At around the age of 6, Taylor had surgery performed to implant a vagus nerve stimulator (VNS) with the attempt to control her seizures. We had no success with this device. By the age of 8, she was at her worst, having back-to-back seizures.

Taylor was slipping away fast. Every effort seemed hopeless. The doctor we were seeing at that time felt Taylor was in a critical life-threatening state, so he recommended that I seek a second opinion. I took Taylor to my hometown of New York City to find a doctor. We later scheduled an appointment at the Comprehensive Epilepsy center of New York-Presbyterian Hospital.

We met with a wonderful neurologist by the name of Andrew Mower, M.S., M.D. Following our first visit with Dr. Mower, we were scheduled to have Taylor admitted into the hospital for EEG video monitoring for one week. After the testing was over, Taylor was finally properly diagnosed with Doose Syndrome. With the correct diagnosis after seven years and a change in her medications, I am thrilled to say Taylor is now one year seizure-free. I can not express enough gratitude towards Dr. Mower for giving Taylor her life back and also giving me back my little girl.

Today, Taylor is a beautiful 9 year old with such a big heart. She was so brave through it all. Although she has cognitive delays, she is a typical 9-year-old little girl who loves to go to school, watch cartoons, play with her little brother, swim, read, etc.

The best advice I can give to other parents who have children with epilepsy is to never give up hope. My love for my child gave me the strength and persistence to never give up. Today I live day to day and know that this is a disability Taylor will carry throughout her life, but for now we have won the battle.

I have learned so much throughout this ordeal. I have learned how fragile life is and how important my faith is. I have learned to be more compassionate towards others and enjoy every single day with my family. God bless all the families who have children with epilepsy.

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