Indy’s Superhero Story

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

• Name: Indy
• Age: 16
• Homecountry: Germany
• Indy loves her sister Anne and her nephew Luca! She always wants to hug him.
• Her family has 2 dogs and she loves to run with them in her wheelchair.
• When the weather is nice, she loves to go on a wheelchair-bike ride with her dad!
• Indy loves her mom’s tablet and Facebook!
• Indy loves music!

Indy’s Medical Journey

TESS Superhero Indy is a lovely 16-year-old girl! Shortly after birth, Indy began having seizures just like her big sister Nikki had. Tragically, Nikki passed away when she was 1.5 years old. Both Indy and Nikki were in the hospital for the first 7 weeks of their lives as we tried to control the seizures and figure out what was going on. At 2-years old, Indy had a gastronomy tube placed in her stomach because she was not getting enough nutrition by mouth. Indy had surgery on her hips at age 7 and 10. The first hip surgery was especially difficult because she did not understand what was happening.

Finally, when Indy was 10 years old, we received a diagnosis of SLC13A5 Epilepsy. It was great to receive a diagnosis, but the disorder was so newly discovered that there was little information about it. Thankfully, Indy’s seizures are currently controlled by medication. She goes to a special school 5 days a week where she receives physical, occupational, and speech therapies. Indy cannot walk, talk, or sit without help. But she can drive an electric wheelchair like she is Max Verstappen (Dutch F1 driver… the best)!