GRI Stories

Our only and beloved son, Bata, is 9 years old. While expecting him we imagined what he would be like, and could not wait for him to change our lives for the better. But when he was born, our lives did change.

Dean was born a healthy baby. Around the time he was two to four weeks old, we started to notice some odd movements. They were like a startle reflex (where you hear a loud noise and get startled). But Deans were more exaggerated and repetitive.  They were randomly happening throughout the day.

Our son Maximilian has GRIA Disorder. GRIA Disorder is an ultra-rare genetic condition caused by a change in one of four GRIA genes. GRIA genes contain the code to create AMPA receptors, which are essential for learning and memory.

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.