It was the summer of 2018 when our son Jaša came into the world. After a difficult labor, I thought the hardest part was behind us and we could finally look forward to joyful moments ahead. But in reality, our journey was only just beginning.
Jaša was born with a cleft of the soft palate and part of the hard palate, which meant I was unable to breastfeed him. We had to use specially adapted bottles for feeding. At 18 months, he underwent surgery, which was thankfully successful and didn’t require further interventions.
We hoped everything would improve after that, but we started noticing that Jaša was different from his peers. He didn’t want to play with other children, often threw toys, and spent most of his time playing with balls. He didn’t babble, didn’t start walking until age two, and was very clumsy. On walks, he would frequently fall. His thin legs were always bruised, but he never stopped moving. Jaša is a very hyperactive child, and it often feels like we’re running—even if we’re just going to the store.
When he was two and a half, we received the results of his genetic testing. That moment was like a knife to the heart: “Your child has SATB2-associated syndrome.”
SATB2?
The news came during a Zoom call, due to COVID-19 restrictions. The information was delivered quickly and with little explanation, which only heightened our shock. We sat frozen on the couch, each of us silently processing the weight of what we had just heard. We didn’t even have time to cry—we were simply overwhelmed and unsure of what the future would hold.
Jaša’s behavior became increasingly difficult to manage. His energy was exhausting, and we were both mentally and physically drained. It was a very hard period—and still is—but we are now managing things a little better. Some days we feel completely defeated, sad, and worn out, but we always find a way to get back up, put ourselves together, and keep going.
Our lives have turned upside down. We are still learning from Jaša every day—navigating grief, acceptance, and everything in between.
Children with SATB2 syndrome typically speak very little or not at all. This often leads to frustration and emotional outbursts because they’re unable to express their needs and feelings. This challenge led us both to attend VML (Verbal Motor Learning) training, and through this method, we’ve helped Jaša learn to say a few words and pronounce almost every letter. His communication skills have greatly improved. He also uses a communication device and has become quite the little chatterbox.
Currently, our six-year-old is learning to use the toilet—another big challenge for our family, but we’re hopeful he’ll soon succeed and we can cross one more hurdle off the list.
As parents, we are often exhausted. Sometimes we lose our way in the challenges of parenting - we argue, we feel overwhelmed- but despite it all, we love each other deeply and face each day with determination and hope. Together, we are fighting through each new challenge, one step at a time.