Sanju has been brave since the beginning. She was born prematurely in 2006 and spent days in the NICU. During that time doctors observed Tonic-Clonic seizures and started her on medication. Afterward, the family was in and out of hospitals to trial different medications. Initially the team thought that Sanju’s prematurity was

causing the seizures and developmental delays, but later her brother Abhi, a full-term baby, defied that belief by having seizures immediately after birth as well.

After extensive studies in metabolic, genetic, and neurological areas by multiple hospitals in North America, Sanju’s family qualified for the National Institutes of Health Undiagnosed Disease Program (NIH UDP). In March of 2014, Sanju was diagnosed with a genetic variant called SLC13A5.

Sanju and her brother Abhi require multiple medications each day, therapies, and frequent hospitalizations. Their family experienced both Sanju and her brother seizing at once and needed to call EMS on numerous occasions. Despite experiencing crisis after crisis, their family remains resilient and determined to find answers and make connections.

While she is nonverbal, Sanju is very social and enjoys forming new relationships. She uses an iPad program (proloquo 2 go) to communicate. She is observant and enjoys watching kids play games on their iPads. She is a huge fan of field trips and parties, and appreciates spending time around others.