Yan has an extremely rare disease. 2

Little Yan's health problems began at birth: he was born with very serious heart defects, which he underwent surgery for when he was just two months old. Until he was one year old, he was in a device that corrected his pelvic joints, and until he was six months old, he was fed through a tube because he could not swallow food normally. But no doctor could determine the cause of such terrible complications.

Closer to four years old, Yan gradually began to talk and walk, and everything seemed to be getting better. But then he ended up in intensive care with hemoglobin levels almost four times lower than normal. His immune system's antibodies began to destroy his platelet cells, causing severe thrombocytopenia. Yan was hospitalized three times a year, where he was given hormone injections and blood transfusions.

It was only three years ago that doctors finally diagnosed him with Kabuki syndrome, a genetic disorder.

Apart from the hormone Prednisolone, nothing helped Yan with his problems of a sharp drop in platelets, constant mucosal bleeding, and bruising. But on the hormone, Yan gained an extra 25 kg of weight: he could barely walk, was short of breath, and complained of pain in his legs and joints.

A new course of treatment prescribed by doctors instead of the previous one came to the rescue. The pills, prescribed for several months, worked wonders – so much so that the hormone was eventually discontinued altogether. Yan began to lose weight, run with his children in the yard, and walk to the lake.

Unfortunately, however, the medication that keeps him healthy and active is very expensive. His mother, who is raising two teenage sons on her own, simply cannot afford to buy it. Please help them in this struggle!