Satya is the absolute light of our lives. He fought all odds to arrive safely into the world in September 2020. Satya was born 8 weeks premature, and started life as a 3 pound baby, fighting to survive due to under-developed lungs. He spent 5 weeks in the NICU and was struggling to reach typical milestones for babies such as crawling, walking, and talking. He has made significant progress through physical, speech, and occupational therapy. We knew Satya was struggling with something else – we just didn’t know what. As first time parents, our worry never went away.

In March 2024, Satya was diagnosed with Lamb-Shaffer Syndrome, a rare neurodevelopmental genetic disorder which manifests itself as a mutation or deletion of the SOX5 gene on the 12th chromosome. Common symptoms include global developmental delay, intellectual disability, optic nerve abnormalities, and autism like behaviors. Lamb-Shaffer Syndrome was only discovered in 2012 and with less than 500 diagnosed cases globally, there is no roadmap for us to follow. We are fortunate to be connected to other families through a Facebook group, where we can share our stories and learn from other parents. Satya's diagnosis has been difficult to navigate, as it's a rare disease and most doctors and specialists have never seen another patient with it.

Satya has an incredibly kind and giving heart. His smile is infectious and he brings happiness to everyone around him. His favorite activities include going to the park, watching cars, and enjoying a lollipop. Satya has had such a positive effect on our family and can brighten up the hardest day. We do not want his diagnosis to define or limit his potential. A typical day for Satya includes daily speech therapy and ABA therapy, with lots of built in play and weekly trips to the local children's library. Every day our goal is to make him happy and raise him to be confident and independent.

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