29 Aug Seth and Lucas: A Sibling Perspective
SLC13A5 Epilepsy affects not just individuals, but friends and families as well. The following perspective, as told by Seth, sibling to TESS Superhero Lucas, aims to give insight into what it might be like to love and care for someone with SLC13A5 Epilepsy:
Can you tell us how you are connected to the SLC13A5 Epilepsy community?
My brother, Lucas, has SLC13A5 Epilepsy.
Describe how you felt when you were first informed that SLC13A5 Epilepsy was Lucas’s diagnosis.
The name is hard to pronounce and I didn’t understand what it meant. I was angry and sad.
Can you describe what a typical day looks like for Lucas and your family?
Lucas is pretty chill. But there are a lot of therapists in and out of our house that work with him.
Could you share a bit about Lucas – what does he like to do? How would you describe his personality?
Lucas is easily excited and is bubbly. He loves music and when I play the drums.
What do you hope Lucas’s future will look like?
I hope they find a cure or treatment. It would mean that maybe he could walk and talk. I would love it if he could get potty trained.