Robbie’s Superhero Story

Boy laughing and smiling in a gym, using a mobility aid and also a TESS Superhero Robbie graphic

Robbie’s Superhero Story

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

  • Name: Robbie
  • Age: 8
  • Homestate: Texas
  • Robbie loves tablets!
  • His favorite cartoons is Super Why!
  • He loves loud music
  • He enjoys playing with his daddy and he loves to spend time with his family!
  • He is very social and likes to be surrounded by people!

Robbie’s Medical Journey

Robbie was born from a pretty standard pregnancy and was induced at term. Shortly after birth, a nurse realized he was having seizures. As new parents, we were in shock. Robbie was only 2 days old, and this was just the beginning of his medical journey. He spent a week in a NICU after which we were sent home with little explanation of the cause of his issues.

We had Robbie on a complex cocktail of medications for the first year of his life but he was still experiencing seizure breakthroughs regularly. We tried some new medications about a year on which made things worse and sent him into a spiral. After this we decided to try the ketogenic diet. This was a hard process, but quickly started to show results. Once we got the seizures under control with the keto diet we started focusing on other areas and quickly discovered his swallowing issues which led him to need a G-tube installed. After that we kept working on learning ways to help Robbie develop. Robbie was still having seizures occasionally, so we decided to try CBD which gave us more control of his seizures, but also impacted his motor and cognitive skills.

Despite all the curve balls thrown his way, Robbie is a happy and stable kid who works hard everyday to make improvements.  No matter what, he is always smiling and is always surrounded by love.

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Robbie’s Photos