Zlatoslava has a rare disease

Six-year-old Zlatoslava is an unusual child with a rare hereditary metabolic disorder: type 1B glycogenosis. This disease has three main symptoms: hypoglycemia (low blood sugar, which leads to seizures, loss of consciousness and even coma), hepatomegaly (enlarged liver and metabolic disorders), and neutropenia (a decrease in the level of white blood cells in the blood, which makes the body more vulnerable to infections). That is why, in addition to constant medical supervision and medication, it is important to monitor the girl's blood sugar level with the help of sensors.

The girl's health problems began even before the expected date of birth – Zlata was born prematurely as a deeply premature baby. During the difficult and painful labor, which required a cesarean section, the question of the life of the child or the mother arose due to heavy bleeding. Thank God, competent doctors managed to save both of them. However, the trials of fate did not end there – Zlata's sepsis after birth and long weeks of intensive care followed. The fragile baby, who weighed a little over a kilogram at birth and lost even more in the intensive care unit, had to gain weight for a long time in neonatology.

Eventually, Zlata's condition began to improve, and the family was finally able to leave the hospital. But the sincere joy of the long-awaited discharge home did not last long. While undergoing rehabilitation, namely massage, the girl had her first seizures due to hypoglycemia, which her parents could not even imagine, and local doctors could not diagnose.

The disease was mercilessly destroying the girl's body, with the liver and spleen taking the brunt of the damage. Only expensive genetic tests, done after careful consultation with leading OKHMATDYT specialists, helped to finally make the diagnosis, which came as a complete shock to the family – not only had no one ever heard of such a disease before, but Zlata had a completely healthy older brother.

Hoping to improve the girl's life, the family began to follow every recommendation of the doctors. But neither the new diet nor the expensive medications helped. Constant concomitant diseases, metabolic crises, weakened immunity and clinical refusal to vaccinate took their toll, and the diagnoses were only added: hypoglycemia, neutropenia, chronic herpes type 7, metabolic disorders, padagric polyarthritis and shortening of the left lower limb. At the age of three and a half, the girl lost the ability to stand on her own. Terrible pain stiffened her body, muscles and tendons became contracted. It took two long years to stop the inflammatory processes with antibiotics and hormones, thanks to which Stryer's Operation put Zlata back on her feet.

Just like any other child, Zlatoslava loves to learn, to discover new things and, above all, to play with children. However, the disease took away her most valuable thing, something that no amount of money can bring back – a carefree childhood. The opportunity to be a part of society, to get to know the world in a circle of peers, to attend kindergarten was replaced by constant hospitals, injections and drips, and now school is in doubt. Only round-the-clock supervision and extremely expensive medications allow Zlata to live at least at the current level, but the family cannot cope with all the costs of treatment. Help this extremely strong girl – give her a chance to see life beyond the lonely and familiar walls of the intensive care unit!