Channel One and Rusfond are asking viewers to help two-year-old Misha, who needs a bone marrow transplant. The parents of a boy with a rare marble disease from Aga will turn to Andrey Malakhov for help Little Misha in Israel with a marble disease

Angelina is two years old. She lives every day with severe pain and high temperature, and once every two weeks she has to undergo a blood transfusion, which she cannot do without. Angelina has osteopetrosis - this disease is called “marble disease”. With this diagnosis, the bone tissue becomes denser and the bone marrow ceases to perform its hematopoietic function. As a result, deformation and pathological fractures of bones occur, and neurological disorders develop. A person gradually loses sight and hearing.

Marble disease is a genetic disease. Every year, at least 600 children with this diagnosis are born around the world. The only chance to save them is a bone marrow transplant, after which the disease completely resolves. Without cell transplantation, children live to an average of 2.5-3 years.

“In Russia, although these operations are carried out, they do not carry out rehabilitation - they do not pull out children. There was only one successful case in the country: in 2006, the baby received a transplant and is alive. The rest of the children, unfortunately, did not survive,” said Angelina’s mother Olga Lychkina.

Angelina was diagnosed almost a year after she began having health problems. In August 2015, the girl caught a cold, but even after recovery, her fever did not subside. The parents began to worry and went to the doctors - low hemoglobin was added to the temperature. The medications prescribed by doctors did not help.

The child was sent for examination, and only after the second x-ray did the doctor notice the pathology in the images.

“The radiologist told us that she didn’t like our x-ray - the bones were compacted, the structure was incorrect. She advised us to contact hematologists in Saratov. We arrived in Saratov, they performed a puncture on us (a puncture of an organ with a hollow medical needle to take a sample for the purpose of diagnosis and treatment - approx.) with difficulty - the bone was very dense, it could not be punctured, two needles were bent. They ruled out leukemia, but told me to consult in Moscow,” said Olga.

In Moscow, Angelina was given a preliminary diagnosis - the same “marble disease”, but to confirm it it was necessary to go to the hospital for examination.

“We found out that the Morozov hospital costs 7.5 thousand per day for just a hospital stay, without examinations, so we had to return home for the quota. We submitted an application to the Ministry of Health, contacted the Morozov hospital, the Rogachev hospital (FNCTS DGOI named after Dmitry Rogachev - approx.), the Russian Children's Clinical Hospital and the Almazov Center in St. Petersburg (FSBI "Northwestern Federal Medical Research Center named after V. A. Almazov" of the Ministry of Health - approx. ). In Rogachevskaya they immediately refused us, they said that they were overloaded and did not work with such diagnoses,” said Olga.

While the family was waiting for an answer from all hospitals, Angelina was getting worse. In early June, she was admitted to intensive care. The diagnosis was confirmed.

The parents contacted all Russian hospitals where bone marrow transplantation is performed. Some were rejected immediately, while others never received a response. The family began to study similar cases - all children with marble disease, who underwent successful surgery and rehabilitation, were treated in Israel. They flew there for a consultation and preliminary examination. They agreed to take Angelina. But an ordinary family from small Balashov has no money for an operation.

“Now I’m on maternity leave, before that I worked in the Prikhoper electrical networks here in Balashov, and my husband worked on a rotational basis in the North, but due to this situation he cannot go there on a shift, because the shift is two months, and we are without him nowhere - just the two of us,” said the girl’s mother.

The family applied to various funds, but so far they have been rejected for various reasons. The worst thing is that while parents are desperately looking for help and support, time disappears: with this disease, the nerve trunks of patients become overgrown, and children begin to lose sight and hearing. The consequences are irreversible, and the disease has been successfully treated for more than twenty years.

Artem Kostyukovsky, a special correspondent for Rusfond, wrote a series of articles about “marble disease” last year. He spoke with three families who were treated in an Israeli clinic and overcame the disease.

“I talked with children after treatment at the Hadassah clinic, where they received a bone marrow transplant - this is now the only way to cope with the disease, they all feel well. But here it all depends on how soon the child had the operation, because with osteopetrosis, if the disease is not immediately detected and treatment begins late, then the child may go blind. One of the children who received a late transplant unfortunately became blind. The problem with vision is the most important there. After the operation, all the children talk, run, play - to me they are ordinary children, if you don’t know that they had such a serious illness,” says Kostyukovsky.

In total, about 250 transplantations have been performed on marble children worldwide. The oldest patient who has overcome osteopetrosis with the help of Israeli doctors will soon turn 30 years old. He leads a full life - he graduated from university, works in social sphere, goes in for sports, is going to get married.

Taking part in it is very simple: just send mobile phone SMS to short number 5541 with the word "good", typed in letters of the Russian or Latin alphabet.

Please note: in a response message from the mobile operator you may be asked to confirm the transfer - these are the requirements of the Law “On Communications”. Please do this, otherwise the money will not reach the children.

For many of the heroes of our reports, the help of Channel One viewers is the only chance of salvation. Among those to whom you gave hope is little Misha with a rare and dangerous “marble disease”. Thanks to you, today the baby flew to Israel, where he will undergo a bone marrow transplant.

One of Misha’s favorite songs is “Nobody Loves You Like Me.” And these words that the baby listens to again and again, about himself and about the life he loves so much. Misha knows well what pain is. He also seems to know how to ignore her. After all, he doesn’t know what it means to live when nothing hurts.

“It’s hard for Mishka, it’s really bad. He feels something, but he is used to having fun, his toys are distracting. Good boy. But sometimes you can see that he gets tired. He sits down - what’s wrong with me, dad? He looks at you and he won't understand. And I don’t understand,” says Alexey Kostrubov, Misha’s dad.

Channel One talked about it on February 3. He has a rare genetic and deadly so-called “marble disease”, osteopetrosis. The bones turn into stones and begin to grow in different directions, pinching the nerves. Only surgery can save the baby. 11 and a half million rubles are needed.

Thanks to the concern of Channel One viewers, a record amount for the last two years was collected that day - almost 66 million rubles. Another 58 children received assistance. You raised money for Misha’s operation in a matter of minutes.

“When we saw that we had collected such a huge amount of money in 40 minutes... I don’t know, I can’t express it. We immediately had hope that everything would go quickly, everything would be fine, that we would have time to save him, because we had very little time,” says Victoria Kostrubova, Misha’s mother.

“It’s a shame that there is no real opportunity to hug everyone who helped, who responded, who didn’t regret it, who didn’t pass by. Say “thank you” to everyone, bow, bow sincerely,” said Alexey Kostrubov, Misha’s dad.

A few days later, after you raised funds for Misha’s treatment, the Israeli clinic said: a donor has been found, come. And here is the airport, the plane, hope for recovery. Despite the fact that the flight was early, the baby did not get enough sleep, everything hurts, he seems to be habitually overcoming this pain and smiling.

A sonorous rrr and a gentle “mom”. Julia waited for three long years for Dima to be able to pronounce this word. Therefore, now, every time her son calls out to her, there is a smile, a lump of grief, and tears welling up. Not to mention talking - the baby started making sounds quite recently. Dima has a rare benign brain tumor. Was. It's in the past. Thanks to you, the tumor was removed a year and a half ago. Before this, the baby was constantly tormented by attacks - the disease progressed.

“I still remember the first time he had a generalized seizure. His eyes are rolled up, before your eyes he turns red, turns black and does not breathe,” says Yulia Bychenko, Dima’s mother.

At such moments, with his tiny hand, he seemed to be trying to grope for the elusive life. No crying, no moaning, just paralyzing silence.

Last fall, Dima underwent a post-operative examination, also with money raised by Channel One viewers. The developmental delay is only six months. But Dima, of course, will make up for everything.

“Now we live a full life. We go to kindergarten. We're walking. We communicate with friends. Thank you! All these people returned my son to me. It's a wonderful thing. I see that his thinking works. But this was not the case before, unfortunately. He was just running. Therefore, for me it’s just a miracle in life,” admitted Yulia Bychenko, Dima’s mother.

And this is a miracle that you, the viewers of Channel One, gave, by sending an SMS with the word “Welcome” to the short number 5541.

How can a child sit still? Here comes Kirill, ask him, of course, it’s better to play. Like this, with dad as a racer, racing through the hospital corridors, or with your favorite mouse.

This is a welcoming “yes”, huge eyes and a warm, sometimes embarrassed, smile. It so happens that he hardly plays with his peers - any kind of awkward movement, let alone a fall, can lead to another fracture. Kirill has osteogenesis imperfecta - weak bone tissue. Such children are called “crystal”.

When the baby was born, doctors counted seven fractures: the collarbone, arms and legs in several places. Of course, Kirill may be a crystal baby, but his character is rather steely. Incredible effort just to learn how to sit down. Daily exercises - you need to develop your muscle corset.

“The most important thing is not to be afraid of anything. Even if there are fractures, one should not be afraid of this, so that he feels that they believe in him, that he will succeed,” says Ivan Novikov, Kirill’s dad.

And he really succeeds. He's trying really hard. But in order for bones to break less often, Kirill needs to undergo an expensive course of treatment every two months: drips of a special medicine that strengthens the bones. Kirill lives with his parents in Kogalym. His dad Ivan is a clergyman. Mom is now at home - the family is expecting their second child. Of course, the amount of almost half a million rubles per course is unaffordable. But thanks to you, the viewers of Channel One, Kiryusha has the opportunity to be a little stronger. And he feels your support, because the baby, despite his age, knows well what it means to lend a helping hand, give hope, reassure, support. Even when he himself is in pain, hard, bad, the boy with big eyes does not lose heart.

“One time he broke his arm and leg at once. And he lies there, sees that his mother is worried, all teary. And to support her, he lifts the broken leg with his healthy leg and pats himself on the chest with his healthy arm and shows that you are worried, everything is fine,” says Ivan Novikov, Kirill’s dad.

Thanks to the viewers of Channel One, 3,514 people have already received help. But many more need expensive treatment.

You can transfer money by bank transfer, using payment systems, or by sending a message to the short number 5541 with the word WELCOME in Cyrillic or Latin letters. The cost of SMS is 75 rubles.

Channel One and the Russian Relief Fund guarantee that all funds will be spent on the treatment of specific children. Detailed reports are published on the Rusfond website. Channel One will also continue to talk about those who have already been helped and who are now waiting for your help.

They continue their joint campaign to help seriously ill children. Sending SMS with the word “WELCOME” to the short number 5541, you can help save the life of two-year-old Misha from the Krasnodar Territory. The boy has a rare genetic disease. For a bone marrow transplant, 11 million rubles are needed - an amount that is unaffordable for Misha’s family.

Two-year-old Misha has not yet decided who to be: a striker or a goalkeeper, but he has a head start older sister can already give in any position. This bright child is dancing briskly with his grandfather under folk motives and gobbles it up with gusto favorite treat- sausage. But after a moment he begins to be capricious and asks to be held. He doesn’t show character, it’s just that all childhood joys are very difficult for him. It hurts somewhere inside - explain it two year old child can't do it any other way.

A seemingly healthy baby is given away by his huge, beautiful, but restless brown eyes. And to watch your favorite cartoon, you need to hold the phone right next to your face. But visual impairment is just one of the consequences of this terrible disease. Misha has a very rare genetic and deadly disease - osteopetrosis, or marble disease. His bones turn to stones. There is no room for bone marrow in them, and they gradually begin to grow in different directions, pinching vital nerves.

“When we found out that it was marble, then, of course, there was fear and horror, because this sore is so terrible. She will first take away his hearing, his eyes - he will not see,” says Victoria Kostrubova, Misha’s mother. - We are afraid of being late, of course, because this disease is such that everything can happen suddenly. Here he sits now - nothing, then bang and...”

He doesn't lag behind mental development, but is no longer quite as tall as his peers. He also hardly sleeps and cries more and more often. The doctors explained that his bones seemed to be spinning. And every day Misha is only getting worse. Such children were previously considered hopeless. But now there is a chance for recovery, albeit the only one. This is a bone marrow transplant, which they agreed to do in one of the clinics in Jerusalem.

“The prognosis is basically good. Naturally, the transplant needs to be done as quickly as possible; he needs to find a donor, since he does not have a donor in his family. We will look for a donor in international registries,” said doctor Polina Stepenski.

“No matter how bad it is, no matter how hard it is, it is in any case better if the child closes his eyes forever, and we will never see him again, we will not hear that laughter, he will not ask us to play with the ball. We are now confident that everything will work out. Everything will work out. We wish we had time, but we don’t have time. We should be in time,” says Alexey Kostrubov, Misha’s dad.

But to save this little life, a huge amount is needed - almost 11 million rubles! Without you and me, who are not indifferent to the misfortune of others, this family cannot cope. Only 75 rubles - SMS with the word “Good” in Cyrillic or Latin to number 5541 - a chance to live for little Misha. He knows: you have helped out more than once when there was no one to rely on.

We met Eric at the airport - we really wanted to show you the result as soon as possible. These steps, however, are not without parental support, but how much enthusiasm he has! And the uniform of the Russian national football team was just right for Eric as an incentive. These modern bionic prostheses, also called living ones, were made in a German clinic and will allow the guy to move independently. He dedicated this first hit on the ball with his new feet to you - to all those who responded to his misfortune and helped.

“I want to thank those people who saved my childhood and my future. I wish them good health and may they live a long, long life,” said Eric Voskanyan.

But six months ago you first saw this ten-year-old boy from a small village in Bashkiria like this. While playing with his older brother in a corn field, Eric was hit by a combine harvester. The new reality is like a nightmare in which the boy was left without legs. But the dream of football did not let go. Therefore, as best he could, in his hands, but he continued to play, each time defeating himself first of all. Then you, viewers of Channel One, did everything to make the dream of this strong-willed child come true.

Unfortunately, there is always the fear that the story will not have a happy ending. And my heart aches when it seems that this baby is about to be healthy, but... The tiny little boy - you probably remember him - . We talked about him in December. By the age of three, he had already suffered a stroke, craniotomy and a kidney transplant, which had not worked since birth. He fought for his life to the end, getting out day after day. Thanks to you, the viewers of Channel One, the baby was soon to go for rehabilitation to an Italian clinic. There he would be taught to move and speak. And after New Year's holidays The sad news is like a bolt from the blue. The baby’s weakened immunity could not withstand the load - Vasya died of pneumonia.

But thanks to your boundless kindness - the SMS messages you sent to help - then a huge amount was collected - more than 94 million rubles. And without knowing it, by helping one, you saved another 30 seriously ill children. You have literally performed a miracle. Now, thanks to you, they can walk, they can hear, they can see this huge colorful world and openly, childishly enjoy life, like the mischievous lady, seven-year-old Dasha Rassadnikova. She jumps briskly and fervently on the bed, and a minute later, with the air of an expert, she helps her mother set the table.

Looking at this active and active child, it’s hard to believe that the girl recently underwent serious surgery in London. This blond doll was given as a gift there, she named it Angelina. The clinic staff were captivated by the young coquette.

Dasha was born with numerous developmental anomalies of the genitourinary system. Doctors refused to take on such a difficult case. At seven years old she was still wearing diapers. And peers are sometimes so cruel. Only British doctors agreed to help the family. There was an urgent need to increase the volume bladder and restore urinary continence function. Dasha’s mother is raising her alone; there was nowhere to get money for the operation. Then you gave her a chance for a normal childhood, healthy and without complexes.

“The doctor did a urinary test for us - now she holds urine and walks around in panties. She's happy. Every day she says: “Mom, I’m happy,” says Irina Rassadnikova, Dasha’s mother.

And the smiling boy Misha now hopes only for you, the viewers of Channel One. It’s as if he is trying once again not to show his parents his pain, which is breaking the child from the inside, and he holds on to life, like a father’s finger, with all his might as long as he can. He knows that you have a very big and kind heart, and you will not leave him in trouble. It's so simple - send SMS messages to number 5541 with the word “Welcome”. Time is against the baby. We must try to make it in time!

Thanks to Channel One viewers, 3,451 children have already received help. But many more still need expensive treatment. One, two or as many paid An SMS with the word “WELCOME” can be sent to number 5541. The main thing is to confirm the transfer if the mobile operator asks. The word "GOOD" on 5541.

Director of the Department of TCM and Cancer Immunotherapy at Hadassah University Hospital Polina Stepensky (Jerusalem, Israel): “Due to a genetic malfunction, granulocyte cells do not kill bacteria and fungi in the body. The immune system cannot cope with infections, which over time become deadly. Vadik now has a severe mycobacterial infection, typical of chronic granulomatous disease. Recovery is possible only after BMT; the boy requires an urgent transplant from an unrelated donor. Our clinic has extensive experience in transplantations for immunodeficiency. We are waiting for Vadik for treatment, we will try to help him.” →

Vladimir Kotov, pediatric orthopedist-traumatologist at the Center for Congenital Pathology of the Global Medical System Clinic (GMS Clinic, Moscow): “The girl developed scoliosis due to unsuccessful treatment for congenital dislocation of the hip joints. Due to bone dysplasia, the head of the right femur was destroyed. We examined Angelina and considered that the case was very advanced and complex, so we recommended that the girl’s parents contact foreign clinics. Our German colleagues will begin Angelina’s treatment with endoprosthetics of the right hip joint. I hope the treatment will be successful and the girl will be able to sit and walk normally.” →