Jaśmina Koza

Jaśminka was born on December 30, 2024. At first, there was no indication that anything was wrong. She received a 10 on the Apgar scale. Our joy was immense.

Only later, when the doctors called me into the office, did I learn that Jaśminka had a cleft palate, fused toes, and an extra vestigial finger. However, we still had no idea how serious the disease we were about to face.

At first, Jaśminka managed to drink milk from a bottle, but then she lost the strength and was fed through a feeding tube, which remains with us to this day. The doctors didn’t know what was wrong with her. She was placed in an incubator, and our life turned into constant fear and uncertainty. After numerous tests, it turned out that Jaśminka was suffering from sepsis. Every call from the hospital was incredibly stressful; we didn’t know what news we would receive.
The doctors were unable to make a diagnosis for a long time. On the eighth day of her life, Jaśminka underwent life-saving surgery for Hirschsprung’s disease. Shortly after, she developed another bout of sepsis and experienced more moments of extreme anxiety. That was when we first heard about Smith-Lemli-Opitz syndrome.

When the diagnosis was confirmed, our world collapsed. A sense of helplessness, fear for the future, and hundreds of unanswered questions about how we would cope, what life would be like for our family, especially with our older daughter waiting at home.
After two months, Jaśminka returned home. Those were the most difficult weeks of our lives. We learned all over again how to care for a child with a stoma, how to feed her through a feeding tube, and how to cope with everyday fears.

Since then, we began to intensively seek help. We have been seeing doctors, physiotherapists, and speech therapists, doing everything possible to support Jaśminka’s development. Over time, we have learned this reality and reorganized our lives to provide the best care for Jaśminka while also caring for our older daughter. Each of our weeks is carefully planned and filled with appointments and therapies.

We still remember the doctor’s words: “You know your daughter won’t be able to sit or walk, and that her lifespan is short.” Today, Jaśminka is 15 months old and sitting. We’ve learned to ignore what she should already be able to do. The most important thing is that she’s making progress at her own pace, but she’s consistently moving forward. Every step, even the smallest, is a victory for us.

Jaśminka had enormous difficulty eating for a long time. Today, we see that she’s much better; it’s a huge step forward for us and proof that the daily struggle is worthwhile.

Specialists see tremendous strength and determination in her. Although there are many difficult moments, moments of fatigue, tears during rehabilitation, and moments when we see our daughter’s strength is gone, we strive to be even more supportive. It breaks our hearts, but we know this fight is necessary.

The most important thing is that we see results. Jaśminka is making progress; she’s a very sociable and cheerful girl. Her smile gives us the strength to keep going each day and not give up despite the difficulties.