26 Apr Sanju’s Superhero Story
Sanju is a SLC13A5 Superhero. Here are a few fun facts Sanju’s parents shared with us!
- Name: Sanjitha (Sanju) Vattikuti
- Age: 15
- Hometown: Austin, TX
- Likes: hair styles, dressing up, going shopping and buying glitter
- Loves: parties, lots of people around, fast food
- Favorite activities: Having fun fighting with mother and pinching grandma
Sanju’s Medical Journey
TESS Superhero Sanju was born prematurely. As a preemie, she stayed in NICU in order to monitor her body temperature and other vital signs. When she was 3 days old, a caring nurse observed seizure activity, and doctors started her on seizure medications. Sanju’s seizures remained difficult to control during her early childhood.
My second child Abhi was born 15 months after Sanju and he has the same medical history. Up until Abhi’s birth, doctors hypothesized that Sanju’s prematurity or some brain anomaly was the cause of her seizures and developmental delays. But having 2 children with the same symptoms caused our doctors to suspect that a rare metabolic or genetic condition was the cause.
Sanju was frequently hospitalized during her early years, as we tried more than a dozen seizure medications and other treatments. We traveled across the country to meet leading specialists and underwent many MRIs, EEGs, metabolic and genetic tests to try to find the root cause of the problem.
Finally, a genetic test called the whole exome sequencing revealed that both Abhi and Sanju have SLC13A5 mutations. At the time, there were no published cases of other children with the same mutations and the same symptoms. We googled and found a NIH archival document that mentioned another child with same mutation and the same symptoms. Our doctor connected us with this other family, the Nye family. We finally had a diagnosis.
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To learn more about the Vattikuti Family’s journey, check out the links below: