Kora leaps out of bed every morning, ready to greet the day with joy, excitement, and a great big smile! She is polite and sensitive to others and their feelings, often giving little brother or big sister a hug if they are sad. She loves to help out and is polite - she always says “thank you!” Whenever we are out and about she greets everyone with a “Hi!”, a wave, and a giggle. It might be walking into the grocery store, when she arrives at school, or even at the drive thru window. We are often amazed at Kora’s zest for life. She even received the “Zest” award at school, along with a “Positive Peer” award. She just puts a smile on your face and reminds us all that we can choose how to face the day and all the challenges that can come with it.

For Kora, her challenges have been many. When she was 3 months old, we were getting ready for bed and mom noticed she was warm. She then started convulsing on one side of her body. We realized Kora was having a seizure and called 911. At first it was thought to be a febrile seizure but she then had a second seizure three weeks later and every three weeks moving forward. The doctor quickly recommended testing, diagnosed Dravet syndrome, and suggested finding a neurologist that focuses on Dravet. It was devastating. Watching and wondering what would happen as Kora continued to have frequent seizures, and feeling helpless. We went to Childrens Dallas, made a trip to Boston, and to Cooks, seeking thoughts from multiple doctors that we are so grateful to have, including a wonderful doctor that cares for Kora and our family. Kora has taken so many combinations of medications, tried a special diet, and we manage the best we can as she still battles periodic convulsive seizures and daily myoclonic seizures with eye blinks, head tilt and jerks.

Kora is a resilient little girl. She bounces back and goes right back to what she is doing but there have been hospital stays and anxious, scary moments. As a result of seizures and medication, she has cognitive delays and we have to be very careful to avoid over-exertion, over-stimulation, and getting warm. More work is needed! We can’t stop! We must continue to seek and find answers! We must!

Kora just turned 7 years old and has a big sister, Mei (10), and little brother, Elijah (almost 3). She learns a lot from them and they from her every day. Kora is a spark and reminds us all that no matter what, live life and be happy!