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Mironova Anna, 15 years old

Multicystic kidneys, chronic kidney failure in terminal stage, critical holdback of growth. After kidney transplantation needs to take ATG — Fresenius to prevent rejecting the donor’s tissues and help the child grow. The necessary dose is 15 100-mg bottles, all together worth 199,485 rubles. Medication was financed by AIF charity foundation.

Mother Natalia:

We live in Petrozavodsk. From birth, one of my girl’s kidneys failed, the other functioned badly. She practically spent the first year of her life in different hospitals. Hydronephrosis, chronic polynephritis, constant high fever would not allow to leave the child without the doctors’ constant attention. We did not even have a pram, because the child was growing up in hospital. When Anya turned one, she had cysts removed and for several years she lived in peace. At six she had to have the dysfunctional kidney removed.

After three years at school Anya started to learn at home, she is easily tired and finds it hard to engage in energetic activity. Once she took part in an amateur theatre play, and we were so happy when she received more invitations from the theatre, but it is too big a strain for her. Anya mostly spends her time with her PC or drawing. She does not know what meat, fish, cheese and many other products are like, because she has to keep to a strictest diet.

A while ago Anna had a kidney transplanted from her mother. After the operation she needs expensive treatment. Another complication is that at 15, Anna is only 129 cm tall but cannot take common medications for treatment of such disorders.

“We shall fight for each centimeter,” Natalia says. “I have no idea how we will live if we don’t cope.”

Since the girl is entering puberty, her growth holdback is the main problem — to reach normal height, Anna has to grow 18—20 cm in a year and a half. To achieve the goal, she has to be given ATG Fresenius from the first hours since kidney transplantation. The necessary dose is 15 bottles 100 mg each. The medicine is very expensive. Anna’s mother works at a printing office and cannot afford to buy it.

Commentary from Deputy Chief of the Kidney Transplantation Department at the Russian Research Surgery Centre, Mr. Kaabak:
“On April, 11 a girl came in for kidney transplantation — Anya from Petrozavodsk. Her main problem is a critical growth holdback. At 15, she is only 129 cm tall. It was another mistake of the state healthcare — everybody knew she had a kidney malfunction, but nobody gave her growth hormones. The medicine could be effective if used for two or three years. Now Anya has no time for that, and her only chance to grow is an immediate kidney transplantation. To optimize growth we will use an unusual immune suppression scheme which requires an additional expensive therapy.”

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