GRI Stories

We were on our way to the zoo on a typical Saturday when he had his first grand mal seizure in the car.

Vita was born in August 2013. She is our 5th child. During the pregnancy, I had a strange feeling that something was wrong, but in all the appointments doctors always reassured that everything was fine.

Macsen has the most cheeky personality- he’s learned to eye point to tell us what he wants and has learned some limited signs. He is so much fun when he’s well and is always laughing and smiling.

We go through many different emotions during this journey we are on with Remi. Life is hard at times but so very sweet other times. When Remi is happy, she is so much fun to be around.

We dream for the moment when our little girl can give us a caress or run to meet us. We dream that one day she can see us and see how much love we have for her. Chloe is a fantastic and strong girl, always cheerful and serene.

Benjamin Wann was diagnosed with Epilepsy at three years old, after multiple seizure types from myoclonic to tonic clonic lead to status epilepticus.

Our journey began on November 23, 1991 when our son, Adam, was born. His entrance into our world was not easy.

For many parents, a GRIN diagnosis results in many questions and very few answers.

This is not the life we expected for Coco or our family, however our love for her is infinite and the joy and happiness she brings to our family is immeasurable. Our lives have become much more intentional now and focused on Coco living her very best life.

Lacey still can’t talk yet, but me and mom can tell what she wants 9 out of 10 times with her actions or approximations. It still can be frustrating, because most of the time she doesn’t even know what she wants. But when she repeats I love you as “wub you.” it melts my heart.