Kuba Olszowski

The pregnancy was a textbook affair. During several tests – both funded by the National Health Fund and privately – no one noticed anything alarming. We were thrilled that our long-awaited son would be among our three daughters…

The problems only began after the birth. Kubulek had very low muscle tone, refused to eat, and wasn’t hungry. He wouldn’t breastfeed or take a bottle. He wasn’t gaining weight. We stayed in the hospital for a while, but despite numerous tests, “nothing showed up.” Aside from fused toes, the doctors couldn’t see anything specific… they just kept saying, “Something’s wrong.”

We returned home with a list of specialists and a huge sense of anxiety. Appointments, tests, more opinions – and still no answers. On top of that, constant vomiting after every feeding. A fight for every milliliter of milk, which would eventually return. We were told we were overreacting, that we should calm down…

And we felt something was very wrong.

When Kubułek stopped eating and was extremely weak, we were taken to the hospital for CITO. The diagnosis? Pyloric stenosis and immediate surgery. What had previously “not shown up” on tests turned out to be a real life-threatening condition.

He weighed less than 3 kg when he underwent his first surgery…

We thought that was the end of our problems. That things would only get better from here. Unfortunately, that was only the beginning.

Over time, more disturbing signs appeared. His head was growing too slowly. Microcephaly was suspected. And the words of one of the doctors – uttered without empathy – that “this doesn’t look like a healthy baby”… broke us for a long time.

Kubuś was diagnosed at 9 months of age.

We know who our enemy is. It’s Smith-Lemli-Opitz Syndrome. A very serious metabolic, genetic disease, but we’re not giving up!

We’re fighting for Kubuś’s development and learning to be strong every day. For him!