Brother for sister

Due to a rare genetic disease, Arina risked not to live a year. But the best doctors and genetics, the Advita Foundation, and, most importantly, - the younger brother of Arina Artem, intervened. With his birth, he literally saved her life

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"She will not live up to a year"

The fact that something was wrong with Arina was clear almost immediately: from birth she was too sluggish, slept a lot and ate a little. But the doctors in the hometown of Kotlas of the Arkhangelsk region only shook their hands, it was not possible to establish the cause of problems. A blood test showed a very low level of hemoglobin, and the family with a month and a half girl went to the capital of the region.

There, they urgently made her blood transfusion and sent home. The transfusion helped for a short while, hemoglobin fell again, and Arina, by helicopter, returned from Kotlas to the Arkhangelsk hospital. She suspected leukemia, made a bone marrow puncture, extracts were sent to St. Petersburg and Moscow, and her mother Elena and Arina with a very low hemoglobin was sent home-to wait for an answer from the capitals.

“No one believed that we would get something at all. They told me in Arkhangelsk: “She will not live up to a year.” How do you imagine, live with a child without immunity? There will be nothing good at all, up to the point of abandoning her. After that, it was cut off to Arkhangelsk, we decided that we won’t go there anymore, we had so much time with them, we just lost it. But we did not know how to act, what to do, ” says Arina's mother, Elena, with whom we are talking in St. Petersburg on the playground, while Arina sways on a swing and rides around on a scooter.

Her dad was the first donor of Arina in 2010, but the photo was completely rejected: Maria Ionova-Garbin

For the first time they came here when she was only six months: they gathered and went to St. Petersburg, because Arina's condition caused more and more concerns, and there was no promised answer from the hospitals. They rented an apartment and, on the advice of acquaintances from Kotlas, went to reception at the Research Institute. Gorbacheva.

“In just three weeks, they diagnosed us that Arina had a very rare genetic disease-Schwahman-Daymond's syndrome, this is a redemption state. Leukemia is twenty percent of the blasts in the bone marrow, and she had 16.7. That is, about to begin. She is seven months old, what to do? " - says Elena.

Deadment

Schwakhman-Daymond syndrome is a very rare genetic disease that develops in the child’s body when obtaining genes with a special mutation from both parents. The syndrome disrupts the functioning of the pancreas and the hematopoietic function of the bone marrow and can cause cancer disease.

Arina was a terrible diagnosis on the eve of the new, 2010. For the holidays, the family returned home to Kotlas, and already in February came to Petersburg again to live here with short breaks of about seven years - the most difficult and incredible in life. All this time they were helped by the Advita charity foundation, which Elena was advised at the Research Institute for them. Gorbacheva.

Arina with her mother Lena and brother Artem House in Kotlas Photo: Maria Ionova-Gribin

“Our first acquaintance was in 2009, when we were examined in various hospitals in Peter to establish a diagnosis. These were such very normal amounts, and the doctor said to me: “You will contact Advita, they will help you pay for tests, just take all the checks,” Elena recalls. - I came to Advita, we were not even their wards, and they paid me all the tests without problems, I say: “But how? Is this that it can be? We are not even yours yet?” I was just in shock, of course. "

And in 2010, Advita settled Elena and Arina in the fund's apartment near the Research Institute of Nii. Gorbacheva on the Petrograd side. For Arina with her very low immunity, the proximity to the hospital was extremely important: public transport and even a taxi threatened with new diseases that her weakened body simply could not withstand. In addition, the state of Arina continued to deteriorate, blood transfers and medicines that Advita also paid, it was no longer possible to do, Arina needed an urgent bone marrow transplant.

It was not possible to find an unrealistic donor in Russian or international registers. Then the doctors decided to transplant from dad Arina, who was only fifty percent. The operation was successful, but after seven to eight months, a cytomegalovirus was activated in a small body, which impressed blood cells and caused the rejection of daddy bone marrow.

“In itself, the transplant itself was unsuccessful, but we won the time, ” Elena says confidently. “ After this transplant, cancer cells did not grow, myelodisplastic syndrome did not go into leukemia.”

"Crack for any chance"

The next six years of Arina’s life are endless hospitals, blood transfusion, droppers and a handful of drugs. It would seem that the family lived in the heart of the Petrograd side, but even the Peter and Paul Fortress Elena and Arina first saw only two years ago, and in those years they spent all the time in hospitals.

Arina Photo: Maria Ionova-Garbin

“Children are usually afraid to donate blood even from a finger, and for Arina to pass from Vienna is generally familiar, she simply throws pills like sweets and eats, ” Elena says with a sad smile. - All life in the hospital. She had a bunch of catheters since birth, the cardiac arrest was in intensive care ... Some kind of hospital infection joined, it was hard, they put it in intensive care, and at night she so-once, sighed, and that’s all: blue and blue. If I slept then, she would have gone. ”

Elena honestly admits that now she wants to forget that time most of all, because then it seemed that there was no way out and would not be. And when, after several years of supporting therapy, the head of the hospital invited her to the office, she decided that she and Arina were sent home to die, still not to help. But it turned out that the opposite was true: the family was invited to a unique scientific program.

If briefly, Baboshin was offered under the control of specialists through the IVF procedure to have a second child, which they were simply afraid to give birth on their own. With this approach, he should have been born completely healthy without inheriting dangerous genes, and could become an ideal donor for Arina. Similar procedures have already been done pointily in the USA, but in Russia - never once.

- Was it scary? - I ask Elena. And she looks incomprehensibly.

“They didn’t think about fear at all, ” he says. - There was no options to treat it further, it was necessary to grab onto any chance, for any thread ... They told me: “Go, consult with relatives, with my husband,” and I say: “We won’t even think, we agree of course.”

"Return home"

So in the Baboshin family, Artem appeared - the younger brother and savior of Arina. During pregnancy in St. Petersburg, the whole family lived, they left the ADVITS apartment and rented another nearby, and the employees of the fund helped Arina's father temporarily transferred to work in St. Petersburg, where he, just like in Kotlas, worked on the railway.

Arina and her brother Artem. Artem became the donor of Arina, when he was two years old, and Arina was eight years old photo: Maria Ionova-Garbin

Pregnancy passed calmly, and in 2014, Elena gave birth to Artem - a completely healthy boy. Specialists immediately prepared stem cells from his umbilical blood for Arina's umbilical cord, but they did not rush with the operation: hematopoietic cells were not enough, it was necessary to wait for Artem to grow up.

Due to constant diseases and difficulties with eating, Arina has always been very thin: Elena says that at seven she weighed only sixteen kilograms, and Artem in the incomplete two-about twelve. By all indicators, he could already become a donor for Arina, and the doctors of the Research Institute. Gorbacheva decided on a transplant. Having combined his bone marrow with harvested umbilical cord blood, they received a good transplant and, after severe chemotherapy, transplanted him Arina. Despite the fact that the second transplant was very difficult for the girl, she turned out to be truly successful-the bone marrow took root, her brother saved her sister.

“We postponed a lot of things, but not in vain,” says Elena. - For Arina, of course, Peter is a hometown. When we brought her home, but we have a small city, she says: “Fu, I don’t want to live here.” We are all in the "Advitian" apartments, there are many people, children, communication. The used, in general, live in a communal apartment. And we came home, we seem to have no one to talk with, and there is no one to play with. She will come out, walks with her brother, and that’s it. But we are already forgetting Peter, learn to live at home. We always wanted to return home. ”

"I can not imagine life without it"

If the pandemic does not violate plans, on September 1 of this year, Arina will go to school for the first time. Before that, she studied at home due to weak immunity, but now the doctors have given permission to find out full-time, which means that she will finally find friends and girlfriends in her native Kotlas, now there is really not enough communication. Artem will join Arina in the next September, when he turns seven.

Arina in the courtyard of the hotel in St. Petersburg, August 2020. Arina and mother Elena arrived for the examination six months after the last visit to St. Petersburg. Arina is 11 years old. Most of her life Arina lived in St. Petersburg, this was required by treatment of photos: Maria Ionova-Garbin

True, they still continue to come to Peter Elena and Arina at least once every three months in order to undergo planned examinations, take tests and, of course, walk on the native Petrogradka, and also meet with friends from Advita. Elena is sure that without the help of a fund that supported them for so many years, they would not have coped, simply did not pull the treatment, rental housing and household expenses.

“A person probably can survive everything. They say to me: "Len, how do you live?" How to live? We would never abandon Arina, did not leave. You probably get used to it all the same. Maybe this character would be weaker, so maybe nothing would have happened. And then he runs, jumps, although they said, he will not live up to a year. I can’t imagine life without it, ”Elena shows her head with a movement of her head: a tall, slender and very mobile girl who spaces a carousel, in front of Elena, tears perform. But this seems to be tears of joy.

The fact that Arina is alive is the merit of dozens of specialists who coordinated their efforts and offered a unique treatment, the merit of her brother-hero and her courageous parents. They all, like hundreds of other people, have been supported and supported by the Adwita charity foundation for all this time. It helps people who need bone marrow transplantation, and laboratories of the Research Institute for them. Gorbacheva. And you and I should help Advit at least a small, but regular donation, because it is a chance to save someone’s life in the most literal sense. Take - and save.