Vanja’s Family
Vanja’s Family
We are a family from Serbia, and this is our story of struggle, fear, hope, and unconditional love.
Our older daughter was diagnosed with PFIC type 2 when she was only four months old. At that time, she was the only recorded case in Serbia. Everything that followed was unknown, frightening, and overwhelming. When she turned one year old, we traveled to Italy for a liver transplant. The surgery lasted 11 hours — for my husband and me, it felt like 11 years. Every single minute felt endless.
Thanks to the incredible doctors and medical staff, our daughter is today a healthy child. She goes to kindergarten, attends ballet classes, and is joyful, curious, intelligent, and full of life. Looking at her now, it is hard to believe what she has been through.
Three years later, we decided to give her a sister. Sadly, fate was cruel — our younger daughter was also diagnosed with PFIC type 2. She is now two years old and faces a very difficult daily reality. The itching is so severe that she wakes up at night covered in blood from scratching. Watching your own child suffer and not being able to immediately take the pain away is something that cannot truly be put into words.
However, a week ago we were given a ray of hope — the medication odevixibat was approved, and our younger daughter will be the first child in Serbia to receive it. We see this as a new chance and a new beginning.
We do not lose hope. We are here for our girls 24 hours a day, surrounding them with love and strength. With our heads held high, we move forward, hoping that this agony will soon come to an end and that we will finally be able to enjoy their childhood without fear — the way every child deserves.