Brayden's Superhero Story – TESS Research Foundation

01 Nov Brayden’s Superhero Story

November 1, 2020 by tess

Brayden is a SLC13A5 Superhero. Here are a few fun facts Brayden’s mom shared with us!

Age: 13
Homestate: Florida
Brady stood up for the first time when he was 4 and hasn’t stopped trying to walk since!
Brady played soccer with our local youth team and his brother was an assistant coach! Best. Memory. Ever!
Brady loves his siblings so much!
Brady is a Daddy and Nanny’s boy!

Brayden’s Medical Journey

On January 30, 2007, our Brayden Hans Grover was born. He was 7 lbs 5 oz and perfect. I remember seeing him for the first time and noticing that he didn’t cry. In hindsight, this was likely one of the first signs that something wasn’t right.

That evening they took Brady to the nursery. At 12 am, the hospital staff told us that he was having a lot of small seizures and they were starting him on a seizure medication called phenobarbital. They assured me that it was likely benign, and he would be fine. He wasn’t. They quickly realized phenobarbital wasn’t working and added Trileptal.

I remember feeling so sad and disconnected. A mother should be able to touch and console her baby, but he was in an isolette with IVs, tubes and wires keeping him alive. After 3 weeks in intensive care on his medications, we took Brady home. He was only home for a week before we had to rush him to the hospital due to cluster seizures.

The local hospital seemed confused by his condition and took him off of phenobarbital completely. We returned home for only 24 hours before we ended up at another hospital, where Brady had a massive seizure. No matter what they tried, Brady wasn’t breathing normally, and he wouldn’t stop seizing.

Brady was put in a medically induced coma to stop the seizing. We were devastated. He was only a month old and had already been through so much.

Brayden remained in a coma for 48 hours before the doctors felt that it was time to wake him up.

Despite everything, Brady woke up hungry and alert. Staying true to his warrior attitude, he even smiled at us. That’s when I knew I had a fighter on my hands.

Brayden is now 13 years old, and he is nonverbal but very visually expressive. Brayden can now walk short distances and has been relatively stable on medications in recent years.

I wish he didn’t have to take medication multiple times a day. I wish I could stop living in fear of debilitating seizures. I wish he could tell me what he is thinking and feeling. There remains an urgent need for more understanding about and better treatments for SLC13A5 Epilepsy. We are determined to give Brady the brightest possible future.