Benji’s Story

As told by his Mom, Chelsey:

I am the mother of a 5-year-old boy who has epilepsy and global developmental delay. He has an SCN1A gene mutation and has been diagnosed with GEFS+/potentially Dravet syndrome. His seizures are currently uncontrolled. 

He had his first seizure when he was 14 months old. The longest he’s gone without a seizure is 6 weeks. He was developing normally until about 3 years old. He currently is at about the 2 to 3-year-old level in most areas of development. 

With all that being said, he is the most loving, kind, empathetic, laidback, and independent little guy. He loves poutine, his sister, and hitting balls with rackets, paddles or hockey sticks. He has awesome grandparents on both sides, plus his parents and a little sister. He loves his dad SO MUCH. 

Kind words you would like to share with a parent or someone newly diagnosed:
If I had any words of wisdom for anyone with epilepsy, I would say try to build a support network as best as you are able. Epilepsy can feel like such a lonely disease yet so many people in the world live with it on a daily basis. I would also say to advocate for your kid/for yourself. Sometimes things fall through the cracks and being more thorough really helps! Try to enjoy the small things, as I understand how all-consuming this disease can be and how difficult it is to enjoy other aspects of life.

Connect with Chelsey:
Instagram: @chels.lev