Janja is a child from a carefully monitored second pregnancy. She was born at forty weeks, but at birth she did not breathe for two minutes. Because of this, she was immediately intubated and transferred to the neonatal department, where she spent the first month of her life in an incubator.

For the next year and a half, she was treated for hypotonia through numerous physical therapies. After an MRI scan in September 2019, doctors finally established her diagnosis.

Janja has Joubert Syndrome, a rare condition involving underdevelopment of the cerebellum and brain stem. In addition to Joubert Syndrome, she also has polydactyly (six fingers) and right eyelid ptosis, which she had surgically corrected when she was only three months old.

After two and a half years, Janja managed to sit on her own, gained head control, and began using her hands, but taking her first steps will still require a long journey. After four and a half years, her parents learned that Janja also has a fatal variation of a gene mutation.

Despite everything, Janja is a cheerful, bright, and loving child and full of life. She adores her brother and other children, but she cannot play with them. She is positive, always smiling, and tries so hard. Everyone’s greatest wish is to see her walk, hold her brother’s hand, and finally step into the world of childhood where she truly belongs.

To stand on her own feet, Janja needs daily physiotherapy treatments, spa and rehabilitation programs, sessions with a speech therapist, defectologist, somatopedist, psychologist, and pedagogue, medical and orthopedic equipment, tools for therapy at home, pet therapy, hippo and hydro therapy, laboratory tests, specialist examinations, eyelid surgery, stem cell transplantation, medical supplies, medications, as well as funds for travel and accommodation during treatments outside her hometown.

I am a close family friend, and I am organizing this fundraiser on behalf of Janja and her parents to help them afford life-saving treatment.