Darina Zuikova lives with her parents and older brother in the village of Uzyak in Tatarstan. Rather, she was born and lived there for the first two months. And then she ended up in one hospital, then in another, and a third - and since then she has almost never been at home. Darina has a severe congenital kidney disease - nephrotic syndrome. Now the girl's condition is rapidly deteriorating; only a kidney transplant can save her. The donor will be Darina's grandmother. For the kidney to take root and to last longer, medications costing more than two and a half million rubles are needed. The amount for a family is too heavy.
Darina has been living in the hospital for almost six years. Here she began to crawl, talk, play with dolls, and now she is learning to read syllables.
The girl was born healthy, however, the doctors revealed that she had a small oval window in the heart septum, but over time it tightened on its own.
When Darina was two months old, her mother, Oksana, received a call from the clinic. “The test results that you took have come back,” the nurse recalled. - Come urgently. A protein was found in the child's urine."
The tests were repeated - during this time the amount of protein doubled. The girl did not return home, she was hospitalized in the central regional hospital, and then sent for a consultation with a nephrologist in Kazan, in the Children's Republican Clinical Hospital. After examining the kidneys and abdominal cavity, the child was diagnosed with congenital nephrotic syndrome.
“All protein, which is the building blocks of the body, is washed out in the urine,” the doctor explained. “And without it, a person cannot grow and develop.”
Darina was prescribed hormone therapy. And to replenish the protein in the body, droppers were put. The baby ate poorly and grew very slowly. Fortunately, this did not affect the general development. At a year and three months, Darina learned to walk, at two she already spoke in short phrases. The first words were "mom", "injection" and "hurt."
Darina celebrated her third birthday at the Moscow National Medical Research Center (NMRC) of children's health, where she was transferred from Kazan.
In Moscow, the girl underwent a genetic analysis, according to the results of which the doctors clarified the diagnosis: congenital nephrotic syndrome, genetically determined. This meant that the main cause of the disease was cell mutation. Oksana was warned that the changes in the kidneys are irreversible and transplantation will be required soon. In the meantime, the doctor promised, if Darina's condition stabilized, to let her go home for six months.
“My daughter felt much better, and for the first time I heard her laugh,” Oksana recalls.
Six months later, Darina's creatinine level jumped sharply, the girl was swelling a lot, she had a high temperature that did not subside. In the Kazan hospital, Darina began to carry out the hemodialysis procedure - blood purification with the help of an "artificial kidney" apparatus.
In September, the girl was transferred to Moscow, to the National Medical Research Center of Children's Health. Now she is being prepared for a transplant. A kidney donor has been found. It will be Darina's grandmother.
- Lately, my daughter lies almost all the time and eats little, - says Oksana. - With an increase of 104 centimeters, it weighs 14 kilograms. Every time before the dialysis procedure, which lasts all night, Darina says: “Mom, I'm so tired of being sick. I want to go home".
For a successful transplant, the drugs eculizumab and alemtuzumab are required, which reduce the aggressiveness of the donor organ and double the life of the transplanted kidney. But these drugs are not available in the transplant department of the National Medical Research Center of Children's Health. And they are very expensive, Darina's family cannot afford to buy eculizumab and alemtuzumab on their own. I need your help!
Head of the Department of Organ Transplantation for Children at the National Medical Research Center for Children's Health Mikhail Kaabak (Moscow): “Darina has end-stage chronic renal failure. The girl needs an urgent transplant of a related kidney. The grandmother will be the donor. To reduce the risk of donor organ rejection and increase its service life, special drugs eculizumab and alemtuzumab should be used before, during and after surgery. Unfortunately, these drugs are not available in the department."
The cost of medicines was 2,779,392 rubles. At 17:00 (2020-11-12) 164 readers of Lenta.ru collected 235,090 rubles. 1 389,600 rubles were contributed by the Tatneft Foundation. 16,305 rubles were collected by viewers of the State TV and Radio Broadcasting Company "Tatarstan".2553 rubles collected by viewers of NTR. 186 441 rubles were collected by readers of business-gazeta.ru and rusfond.ru
949,403 rubles are missing.
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