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

"Marble Disease" genetic disease. Every year, at least 600 children with this diagnosis are born in the world. The only chance for their salvation is bone marrow transplantation, after which the disease completely disappears. Without cell transplantation, children live on average up to 2.5-3 years.

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

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

The child was sent for examinations, and only after the second x-ray the doctor noticed the pathology in the pictures.

“The radiologist told us that she did not like our x-ray - the bones were compacted, the structure was wrong. She advised us to contact hematologists in Saratov. We arrived in Saratov, they took a puncture from 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 is very dense, it did not pierce, two needles bent. They ruled out leukemia, but they told me to consult in Moscow, ”Olga said.

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

“We found out that the Morozov hospital costs 7.5 thousand per day, just a hospital, without examinations, so we had to return home for a quota. We filed an application with the Ministry of Health, applied to the Morozov Hospital, Rogachev Hospital (FNKTs DGOI named after Dmitry Rogachev - approx.), RCCH and the Almazov Center in St. ). In Rogachevskaya, they immediately refused us, they said that they were busy and did not work with such diagnoses, ”said Olga.

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

Parents applied to all Russian hospitals where they perform bone marrow transplantation. Some were denied immediately, while others never received a response. The family began to study such cases - all children with "marble disease", who successfully underwent surgery and rehabilitation, were treated in Israel. They flew there for a consultation and a preliminary examination. They agreed to take Angelina. But an ordinary family from little Balashov does not have money for an operation.

“Now I’m on maternity leave, before that I worked in the Khoper electric 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 watch, because the watch is two months, and we are nowhere without him - we are just the two of us, ”said the girl’s mother.

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

Artem Kostyukovsky, Rusfond's special correspondent, last year wrote a series of articles about the "marble disease". He spoke with three families who were treated in an Israeli clinic and defeated the disease.

“I talked with children after treatment at the Hadassah clinic, where they underwent bone marrow transplantation - this is now the only way cope with the disease, they all feel good. But here it all depends on how soon the child had an 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 had a late transplant was unfortunately blind. The problem with vision is the most important there. All children after the operation talk, run, play - for me it’s like ordinary children, if you don’t know that they had such a serious illness, ”says Kostyukovsky.

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

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

Pay attention: 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 the viewers of Channel One is the only chance for 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 receive a bone marrow transplant.

One of Misha's favorite songs is "No one loves you like I do." 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. How to ignore her, he also seems to know. After all, he does not know what it means to live when nothing hurts you.

“The bear is hard, 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. Sit down - what's wrong with me, dad? He looks at you and he doesn't understand. And I don’t understand,” says Alexei Kostrubov, Misha’s dad.

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

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

“When they saw that in 40 minutes they had collected such great amount money ... I do not know, not to transfer. We immediately had a hope that everything would go quickly, everything would be fine, that we would have time to save him, because we have very little time, ”says Victoria Kostrubova, Misha's mother.

“It is a pity that there is no real opportunity to hug everyone who helped, who responded, who did not regret, did not pass by. Say "thank you" to everyone, bow, bow sincerely," said Alexei Kostrubov, Misha's dad.

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

Voiced prr and gentle "mom". When Dima can say this word, Yulia waited for three long years. Therefore, now, every time her son calls out to her, and a smile, and a lump in grief, and tears well up. Not only to speak - the baby began to pronounce sounds quite recently. Dima has a rare benign brain tumor. Was. It's in the past. Thanks to you, a year and a half ago, the tumor was removed. Prior to this, the baby was constantly tormented by seizures - the disease progressed.

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

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

Last fall, Dima was on a post-operative examination, also with the money raised by the viewers of Channel One. 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 are walking. We communicate with friends. Thank you! All these people have returned my son to me. This is a wonderful thing. I see that his thinking works. It didn't happen before, unfortunately. He just ran. Therefore, for me, it’s just a miracle in life, ”admitted Yulia Bychenko, Dima’s mother.

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

Well, how can a child sit still! Here is Cyril, ask him, of course, it's better to play. So, with dad as a racer, rushing through the hospital corridors, or with your beloved mouse.

It is a hospitable “yes”, huge eyes and a warm, sometimes embarrassed, smile. It so happened that he hardly plays with his peers - any, not just a fall, awkward movement can lead to another fracture. Kirill has osteogenesis imperfecta - weak bone tissue. Such children are called "crystal".

When the baby was born, the doctors counted seven fractures: the collarbone, in several places the arms and legs. Of course, Cyril may be a crystal baby, but his character is rather steel. Incredible effort, just to learn how to sit. Daily exercises - you need to develop a muscular 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 does it all. He tries very hard. But in order for the bones to break less often, Kirill needs to undergo an expensive course of treatment once every two months: dripping a special medicine that strengthens the bones. Kirill lives with his parents in Kogalym. His father Ivan is a clergyman. Mom is now at home - the family is expecting a second child. Of course, the amount of almost half a million rubles per course is unbearable. But thanks to you, the viewers of Channel One, Kirill has the opportunity to be a little stronger. And he feels your support, because the baby, despite his age, knows well what it is to lend a helping hand, give hope, reassure, support. Even when it hurts, it’s hard, it’s bad, the boy with big eyes does not get discouraged.

“One time he broke his arm and leg at once. And he lies, sees what his mother is going through, all in tears. And in order to support her, he lifts his broken leg with his healthy leg and pats his chest with a healthy hand 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 people still need expensive treatment.

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

Channel One and Russian fund help” guarantee: all funds will be spent on the treatment of specific children. Detailed reports are published on the Rusfond website. The first channel will also continue the story of those who have already been helped and who are now waiting for your help.

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

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

One-year-old Belig Tsybzhitov from the village of Aginskoye in the Trans-Baikal Territory urgently needs help. His parents, 22-year-old Gonchik and 24-year-old Sayane Tsybzhitov, are both from the Trans-Baikal Territory. Mom is a social worker by education, this moment in decree. And Belig's dad recently served military service, was demobilized. Both graduated from universities in Buryatia. In 2016, the couple got married. In the same year, their first long-awaited child, Belig, was born to them.

Nothing foreshadowed trouble, the pregnancy was normal, no abnormalities were found. This is what scares the diagnosis of "osteopetrosis", or deadly marble, which comes suddenly. Osteopetrosis is a rare genetic disease in which bone tissue thickens and the bones themselves become very fragile. Any fall leads to severe fractures. In addition, the bones put pressure on the nerves, which causes hearing loss, blindness, paralysis.

Already from the first months of his life, Belig lives in a hospital, and sees doctors more often than his own grandparents. Marble develops quickly, even now the baby has poor vision in the left eye. Further, the insidious disease will completely take away sight, and go on hearing.

Every day I look at the suffering of my teddy bear and cry. I want to take his pain upon myself. But I understand that in order to help our son, we must be persistent and in no case lose heart. I believe that there are many sympathetic, kind, merciful people in the world. And we will go through this path, recover and be happy, - Sayane's mother writes, referring to people in social networks.

In our country, we have not yet learned how to successfully treat osteopetrosis. Therefore, marble girls and boys are forced to collect huge sums and travel to Israel. In the Hadassah clinic in Jerusalem, Dr. Polina Stefansky works, who helped many “marblers” get rid of this terrible disease. Including more than 30 children from Russia went through it.

The young Tsybzhitov family organized their first fundraiser in Transbaikalia. In a few days, caring residents of the region collected the necessary amount for them, thanks to which in early December the family managed to go to the Hadassah clinic. Israeli doctors told them that only an urgent bone marrow transplant would save the child and issued a bill that seemed "cosmic" to the young family. They need 19 million 386 thousand rubles for the operation.

On January 5, 2018, Belig's parents opened an official fundraiser in Buryatia for a baby's bone marrow transplantation in an Israeli clinic.

The invoice issued by the clinic includes the search for an unrelated donor, bone marrow transplantation (3 months) and rehabilitation for 6 months. According to the experience of other children with osteopetrosis, a stay in Israel can be up to a year. Therefore, the fundraising includes spending on rental housing, food and other household items, transport and a visa.

At the moment, Belig's condition is deteriorating. His grandmother is forced to be with him around the clock in the hospital. The kid is losing his sight. Now he is at risk of losing his hearing.

The boy is constantly in the hospital. He already has poor eyesight, he is in pain, because the bones rot from the inside, he is constantly under the supervision of doctors, his grandmother is around the clock. The boy is restless, it is very difficult to deal with him, he has daily pains, - Victoria Olzoeva, cousin of Belig's mother, told Baikal Daily. Without surgery, the outcome of the disease is only one - painful death.

Hello dear friends!
We, the parents of Belig Tsybzhitov, are asking for your help!

Thanks to your kind hearts, my son and I managed to get a consultation at the Hadassah clinic very quickly. According to the results of the examination, OSTEOPETROZIS was confirmed. Belig urgently needs a bone marrow transplant! His eyesight is already deteriorating. Then he will lose his hearing. Then a painful death! Insidious marble destroys the baby's body every second!... It is still impossible to realize what our son will have to go through, with tears in our eyes we ask God to help us every day, because our teddy bear really wants to live! But the price of our son's life is unbearable for us, a simple Russian family! The bill issued by the clinic is huge. Such money and in such a short period of time we alone can not collect! We really want to save our only son and without you we can't cope! We are again turning to you for help!
Only TCM can save Belig! This is his ONLY hope! Help our son stay alive.

We want to see his first steps, to go to school with excitement on the first of September, to observe his first successes in studies, to support his hobbies. Just live a normal life without fear and pain... Please help us, PLEASE SAVE OUR BABY! Any help would be greatly appreciated!

BELIG'S LIFE IS IN YOUR HANDS!!!
With respect and great hope for your kindness and help, the parents of the baby Gonchik and Sayane.

DETAILS FOR HELP:

Sberbank card
Card number: 2202200190619187
Recipient Tsybzhitov Gonchik Erdyneevich - dad Belig.
BinBank card- 5381105007214302
Recipient: Tsybzhitova Sayane Kheshigtuevna - Belig's mother.
VTB card - 4714870070969121
Recipient: Tsybzhitova Gonchik Erdyneevich - father Belig
Yandex money: 410014518105064
Qiwi: +79994801078

paypal- [email protected].
Webmoney - ruble R946384480950, dollar Z037699222087.
Megaphone- +79242760431.
Mts- +79145235210.

Reference

According to Wikipedia, osteopetrosis or "Marble disease" is a rare hereditary disease, due to which bones thicken and compress the nerve trunks, leading to paralysis, blindness, deformity of the skull, spine and chest.