A girl with a rare disease. 2

4-year-old Sofia Taran has a rare disease – neuronal ceroid lipofuscinosis type 1. This is a disease in which the toxic substance lipofuscin accumulates in the neurons. It occurs in young children and is manifested by epileptic seizures, rapid regression of psychomotor skills, loss of learning and self-care. This is what happened to Sofia.

Until the age of 2, the baby developed like other children her age, but then she stopped eating solid food, developed movements as if she was washing her hands, and after waking up from sleep she would have a fever as if she were cold. Over time, her condition deteriorated: first, Sofia's walking deteriorated, then she stopped walking, then sitting, picking up objects, holding her head, talking, chewing, and responding to directed speech.

Currently, we are collecting funds for the purchase of necessary medical drugs and consumables for Sofia. Let's support her!