When Naomi was just two days old, her parents were informed that she had been born with a cleft in her soft palate, which made it difficult for her to latch on and feed. At eight months of age, Naomi was required to undergo surgery to have the cleft palate repaired.
Naomi continued to display a number of concerning signs, including the inability to talk, to walk steadily, overly large teeth, and having trouble sleeping.
In August 2017, Naomi’s parents asked for a genetic test.
“Six weeks later, I received the phone call that changed everything and made so many things clearer, but at the same time it didn’t,’’ Mum Dalal said.
Naomi had been diagnosed with SATB2 Associated Syndrome (SAS), a rare genetic syndrome. There was not much information available about the syndrome, however after much searching, Naomi’s family was able to find a research paper with more details on the syndrome, and a social media page for a support group for families with children like Naomi.