A family is speaking publicly about the daily challenges faced by their daughter, Kaja, who has lived with serious health and developmental difficulties since birth due to an extremely rare genetic condition.

According to her parents, doctors discovered shortly after Kaja was born that she carries a defect in a gene known as PIGN. The condition affects multiple systems in the body and is linked to developmental delays, epilepsy, and a range of other complications that significantly impact everyday life.

“Kaja’s world is very limited,” her mother explained. “She can only say two words — ‘mom’ and ‘no’ — but each one means everything to us. Every day is a fight for connection, for understanding, and for even the simplest forms of communication.”

One of the most serious challenges has been epilepsy that does not respond well to standard treatment. Her parents say the seizures occur unpredictably and have a lasting impact on her development. “Each episode takes something away from her,” her father said. “It slows her progress and affects other parts of her health, including her thyroid. Watching that as a parent is incredibly hard.”

From the beginning, Kaja’s mother knew she would have to take on the role of advocate as well as caregiver. “I understood very early that waiting was not an option,” she said. “If I wanted to give my daughter the best chance to develop, I had to act, learn, and fight for every form of support available.”

Specialized rehabilitation has become a crucial part of Kaja’s life. Through consistent therapy, her parents hope to help her achieve the highest level of independence and comfort possible. “Rehabilitation is not a luxury for her,” her mother emphasized. “It is essential.”

The family has previously received community support that allowed Kaja to attend rehabilitation camps, something her parents describe as life-changing. “We are deeply thankful to everyone who has helped us so far,” her mother said. “Without that support, many of these opportunities would not have been possible.”

By sharing their story, Kaja’s parents hope to raise awareness about rare genetic conditions and the long-term needs of children living with them. They also want other families in similar situations to know they are not alone.

“Our daughter may face limits that others don’t,” her father added, “but she also shows us every day what perseverance looks like. We will keep doing everything we can to help her live with dignity, comfort, and as much joy as possible.”