Kim and Jackson: A Grandparent’s Perspective

Kim and Jackson: A Grandparent’s Perspective

SLC13A5 Epilepsy affects not just individuals, but entire families. The following perspective, as told by Kim, TESS Superhero Jackson’s grandma, 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?

After my grandson Jackson received the SLC13A5 Epilepsy diagnosis, my daughter-in-law came into contact with the community and directed us to the TESS Facebook page!

What was your first reaction/thought to the news about Jackson’s birth (before the seizures started)?

I was so excited to become a grandma again for the third time! My grandbabies mean everything to me.

What was your first reaction/thought to the news that Jackson was having seizures?

I was very afraid for him and I asked many questions like: Why is this happening to him? Why is he having so many seizures?

I want to help him but I don’t know how I can.

Describe how you felt when you were first informed that SLC13A5 Epilepsy was Jackson’s diagnosis.

I was extremely sad and I wondered what Jackson’s future would look like. Though we could not see the future in the beginning, I knew in my heart Jackson had a purpose in this world and that he would overcome many obstacles.

Could you share a bit about Jackson – what does he like to do? How would you describe his personality?

Jackson is such a sweet boy! He is always smiling and he teaches us to love unconditionally. Jackson loves music and loves to be tickled.

What do you hope Jackson’s future will look like?

I pray for a cure every day. I hope in the future to one day see him walk and to see his seizure control improve.

Anything else you would like to add?

I am grateful for everything TESS Research Foundation does, not only for the children affected, but for the support they provide my son and daughter-in-law. I am praying for strength for all of the families daily.

Would you like to make a donation in honor of Jackson?

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