Thank to all of you for donating miles to the “Grant life” fund! With your help we succeed in performing non-cognate bone marrow transplantations in Russia! The most seriously ill children get their chances to recover. People around the world become donors for them. Doctors with special bags have to travel to the country where the donor lives, and then return home with the salutary cells as fast as possible. Meanwhile the children live in glass boxes and wait for the doctor to come and perform transplantation. We want to tell you about the children who got bone marrow with the Mercy Miles donated by you.
Arina Bukhtiyarova, acute myeloblastic leukemia, 5 years old, Moscow
Before the transplantation the girl had to live in a glass aquarium of bone marrow transplantation department of Russian children's clinical hospital using oxygen mask and opioids. After the backset bone marrow transplantation was Arina’s only chance to overcome the disease. The needed bone marrow was taken from a completely strange person, a 45-years old woman from Germany, who agreed to become a donor for a sick kid from Russia for free.
Arina couldn't even stand up because apart from leukemia she had a compression spinal fracture. Arina had been ill for two years. She had to endure six blocks of chemotherapy. First, a block, then a long recovery, falling hair, lack of forces. Arina fought for her life and won, leukemia started to remit. She was allowed to leave hospital and go home. She drew, dressed her dolls, modelled, learned to read, remembered what left and right, plus and minus were. She grew hair, she took care of it, asked her mom to make beautiful braids, wore little pins and ribbons.
Arina even went to nursery school with other children. Kids went for a walk, they played with sand, swung on seesaw. ”Arina was a healthy child and we thanked God for the miracle that she recovered from leukemia” – her father says. But this september Arina was playing with her friend on a seesaw. Her friend stood up and Arina fell. Since that she started to fell pains again. These pains were a sign of a spinal fracture and of leukemia backset. It meant chemotherapy, hospital and bald head all over again.
The disease developed rapidly, it soon became clear that the girl couldn't do without transplantation. Mother and father didn't match as donors, all hopes were set to Arina's younger brother, Vitya. But even his bone marrow was incompatible with his sister's. No donor was found in the Russian bank of cord blood. German Stefan Morsch Foundation was the last hope, doctors sent there a blood sample and got a positive answer, the donor was found.
Pavel Trahtman, a doctor from the bone marrow transplantation department, flew to Frankfurt thanks to the Mercy Miles. Arina was given transplantation on the night of January, 6. It has been a month since the transplantation, Arina feels much better. The latest exams show that there are no mycotic infections on her body, nor there are cancer cell in her bone marrow. Arina changed her blood type. She used to have the AB type, now she has A, like her donor. Doctors are now trying to put Arina on her legs. She's been in bed for four months, now she is learning to walk again. Wearing spinal assistant, a few steps a day. As a reward for all the sufferings she had to endure, father presented Arina a cell phone on the advice from doctors who want the girl to feel connected with the world. Now Arina talks over the phone a lot, she phones her grandma, aunt, her little brother. Several times a week he comes to the hospital, puts on a mask, a gown, gloves, and then he speaks with his sister through a little window in he glass box. Father brings her fresh kids magazines and cartoons. Arina no longer needs anesthesia, she gradually returns to her normal life. Soon she will go home. Arina dreams of becoming a mother and having two children.
Erica Amiroslanova, Fanconi anemia, 6 years old, Volgograd
6-year-old Erica agreed to receive the bone marrow transplantation because she fears when her nose is bleeding. She believes her disease, aplastic Fanconi anemia, means bleeding nose. The girl dreads the sight of blood, so she will do anything rather than suffer it again.
Erica lived in Volgograd with her mother, father and elder brother. She has been considered an ailing kid from little up and spent most of her time at home watching TV and dreaming of being a circus acrobat. Erica saw acrobats in the nomadic circus that once came to the town. Erica decided some day to fly high under the big top and do breathtaking stunts in the air.
She hasn't tried her hand at acrobatics yet – she’s afraid to have her nose bleeding again because of brusque movements. That’s her persistent fear. Once in the summer of 2009 she was sleeping in her bed as the nose started bleeding at 5 a.m. It couldn’t be stopped and Erica burst into tears and cried the parents should send for a doctor or ambulance. The ambulance came and took her to hospital. So they learnt their daughter had aplastic anemia, a serious blood disease.
Doctors in the Russian children's clinical hospital told the mother Erica needed a non-cognate bone marrow transplantation, that was the only therapy to help. Blood examinations were made to all members of the family and no-one matched. The blood test results were sent then to Germany, donors were searched for all around the world. All this time Erica was at home and her mother called the doctors monthly to ask: “Have you found a donor for her?” And the answer was: “No, please call later”.
Erica's father is an engineer at a building complany, her mother is a midwife, but she had to give up the profession as Erica was born. Earlier the family lived in Dagestan, but they moved to Volgograd 9 years ago. They go in Dagestan only on holiday to visit the grandparents. There are sun, sand and sea. Erica is fond of water and can sit there for hours! She cannot swim yet, so the mother wears an air-jacket on her.
At home in Volgograd Erica sits in front of the TV screen watching children channels, films, series and cartoons. She knows all of them. She loves the song about Drakosha (a little dragon). She has even learnt the English alphabet through TV and now looks forward to go to school to show her knowledge. Erica has no dolls, but a rocking horse. She loves horses. Every day she and her mother go for a walk in the neighboring park, where children are taken for a circle ride on horses. And every time they go by Erica pulls her mother to them. She pats them on the warm nose and rides a circle. For every holiday she asks her parents to give her a horse. When she is asked where the horse will stand or who will feed her, she just smiles and looks down to the floor.
In the Autumn the mother called in the hospital and asked if a donor had been found. And the doctors said yes, there was a donor and a long waiting lists for the transplantation ward, up to the winter. The transplantation was assigned on January, 27. The mother was afraid that Erica would cry and resist going to hospital. But she was so scared of nose bleeding that she agreed even to shave off hair. Now she – a little bold-headed girl – lives alone in a totally sterile ward in the bone marrow transplantation department. The mother comes up to the transparent ward wall and talks to her daughter through the glass.
On January, 25 the bone marrow transplantation doctor Larisa Shelekhova flew off to Dresden to pick the bone marrow for Erica and returned the next day. Now the girl is restoring after the transplantation.
Erica told her mother recently: «If I recover, we will go to a shop and buy all the sweets they have, right?» The mother smiles and promises to buy all the sweets in the whole world so that she get better.