We are sitting on a bomb

To live twenty -five years, Alina needs to take a medicine unregistered in Russia every day. The Ministry of Health gave permission to import it, but in the department of the Smolensk region for 10 months now they cannot find 12 thousand rubles a month

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A month after the birth of Alina, they diagnosed - cancer of the eye. She had two courses of chemotherapy and were already preparing to cut the right eye, when suddenly it turned out that the tumor is benign. Alina can live with this diagnosis. That's only to stop the attacks of epilepsy, which inhibit development and reduce life, it needs unregistered medicines in Russia. The Ministry of Health gave permission to import tablets, but the Department of the Smolensk region has been silent for ten months now. The price of the issue is 144 thousand rubles. Now the human rights project “Patronus” helps to get the medicine under the law by the girl’s parents. But until the end of the permit, only a month remained.

If your child’s rights are violated, you can also contact the “patronus”: appeal to cartridge

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Alina

Alina Oganesyan is three years and nine months, she lives on the outskirts of Vyazma. Her dad works as a guard, mom sits at home with her younger sister - four -month -old Sonya. Parents took a loan to buy a tight, cozy odnushka in a hostel. The only bedroom was divided in half - they fenced off the parent part (part -time also a living room) from the nursery. Alina sleeps in the kitchen, Sonya in the nursery. Only a sofa with five pillows with letters formed in the word “family” is placed in the living room - a gift for mom for dad for the anniversary. In the nursery - a crib, a cabinet with children's clothing, dolls and a photocorox. For a family in which two children have a rare genetic disease, this is one of the most necessary investments.

Rafik is tall, black -eyed, in a hat pushed on the very eyebrows, and the form of a “night patrol”, a forty -year -old Armenian. Family breadwinner. He works in the rapid response group of a private security agency. Hurries in cafes and shops when alarm or alarm button is triggered there. This work allows him to be at home often. While Olya and I, the wife of the Rafik, are sitting in the kitchen, he returns several times - he brings Alina from a speech therapist, brings a hot chicken-grille for lunch, enters the documents to take them to social protection for the registration of annual financial assistance (last year they gave three thousand rubles). The life of two little girls fits in two cellophane bags with the image of Santa Claus. There are thousands of sheets with graphs of brain fluctuations.

Alina Photo: Diana Khachatryan

The house is warm. Everyone who comes to visit is sitting in a small kitchen for hours and do not think to leave. Ole is 31 years old, she is nimble and smiling. On the chest, a wooden cross on a black lace is adjacent to a gold chain.

Olya fell in love with Rafiks at the age of seventeen. When they started living together, my mother gave her a picture with storks. Olya could not get pregnant for ten years, spent all the savings on campaigns to doctors and medicines. Nothing helped. She had already reconciled with infertility and suddenly a miracle became pregnant. At 32 weeks at the ultrasound, doctors found a neoplasm in the heart of the child and advised to go to give birth to Moscow. There, a geneticist from the Research Institute of Pediatrics and Pediatric Surgery warned Olya about the presence of a child of a genetic disease - tuberous sclerosis.

“We were told to come once a month for examination,” Olya recalls. - We calmed down and left home. And a month later, the optometrist in the clinic of Vyazma said that Alinochka had cancer. We were sent to the regional hospital, then to Kaluga and the Oncology Center in Moscow. The diagnosis was confirmed everywhere. I told them about tuberous sclerosis, and they did not understand that it was at all. They confused and called the disease “tuberculosis sclerosis”. As a result, we spent six months in the hospital, took two courses of chemotherapy. I did not sleep at night. The husband came to the hospital and, together with Alina Revel, when they could not find Vienna. "

After the course, it was necessary to donate blood and watch the dynamics of white blood cells and platelets every two days. Olya lived with relatives and friends in Moscow, went through the whole city with a baby in her arms - an hour and a half in one direction. For six months, the family spent half a million rubles, there was no longer enough money for a rented apartment.

Then the doctor from the oncology center said that the tumor does not decrease, and the eye needs to be removed so that the cancer does not spread to other organs.

“We took shape for surgery and third chemotherapy,” says Olya. - And on the same day, they accidentally hit the office of the genetics. She passed by Alinochka and asked to go to her. She explained that this is a gamartoma of the retina, an ophthalmic manifestation in tuberous sclerosis, and not cancer. She called the professor and showed him the drawings - two tumors looked the same, differed only in the texture: one smooth, the other rough. ”

As a result, mother and daughter went to St. Petersburg - do a genetic analysis. They confirmed that Alina has no cancer, but there is tuberous sclerosis. A rare genetic disease provokes the appearance of benign tumors (gamart) that affect the functioning of different organs. The disease is constantly progressing, patients rarely live for more than 25 years.

"Well, you are rejoicing that we have not removed your eyes"

“Then I went to the doctor who revealed cancer in our first month. She looked at me and smiled: " Well, you are rejoicing that we have not removed your eyes . " I said nothing. So tired in six months that I just wanted to get out of there as soon as possible, ”says Olya.

Even during the second year of chemotherapy, Alina began epileptic attacks. The girl froze and looked at one point, the hand began to twitch for no reason. At first, a six -month Alina did not pay attention to seizures. But when they became stronger and stronger, she began to whimper. Cry. Scream. Olya's heart burst in pain. Doctors prescribed Sabril . Alina stopped freezing, but the brush continued to twitch.

“We were offered to do the operation - to completely turn off the left hemisphere,” Olya says. “Since there was only one focus of increased impulse in Alinochka’s head, provoking seizures, there was a probability of 95%that they would pass . ”

Alina with mom photo: Diana Khachatryan

Olya decided on the operation. The attacks are gone. However, Alina survived an ischemic stroke and fell into a coma. Doctors advised to prepare for the worst, but Olya was waiting for a child for too long to give up. On the fourth day, Alina came to her senses. The next three years I lived in hospitals - my mother drove her daughter to rehabilitation and adaptation programs. Everything at your own expense.

“We are sitting on a bomb,” Olya sighs heavily. - It is not known what is happening in another hemisphere of her brain. We stopped one hearth, but it can earn a new one. The disease is unpredictable. Thousands of things can provoke an attack - from snow to fright and massage. You need to sit all the time and look at the child so as not to miss the attack. My head is going around. Eathes everywhere seem. The child froze, you start shaking him - you are afraid. It is very important to start taking medicine as soon as possible. Some children froze for two months, parents did not know about the diagnosis, and the child’s development stopped. Each attack is the death of brain cell. If you stop taking the medicine, then the child can go into “status”. This is a complication of epilepsy, when protracted attacks last more than thirty minutes and can lead to death. ”

Today Alina is three years and nine months. If you delve into blunder hair casting in red, then you can find two thin strips passing through the entire skull - scars from the operation. Alina periodically repeats the mantra: "Mom, mom, mother, mother." Another mother would have long said: “Stop mumping,” but Olya turns into her daughter every time. She admits that at such moments she thinks to herself: “Speak, just say.”

Alina sees only one eye, laminates on the right leg. She can raise and lower her right hand, but the brush does not move, as if a stranger. The right side is affected. Kids, eyes, heart, head. The organs are covered with growths, like a frog. “I have a strong girl,” Olya proudly says. - Fighting his problems. If he falls, he will not say: “Mom, give my hand.” She will rise, although it is hard for her, I know. Sometimes he tries to put the fork in the right brush and is angry, which does not work. And then he is forgotten. ”

Alina suddenly approaches me and hugs with one hand. She is twice as much as that of ordinary children, and the hug is strong.

Sonya

Four months ago, Alina had a younger sister Sonya.

Olya really wanted to give birth to an assistant. They did a genetic analysis with her husband and found out that they are absolutely healthy. Doctors then explained the appearance of tuberous sclerosis in the family with a spontaneous mutation. At 32 weeks, we again went to an ultrasound, where they again made a terrible diagnosis - tuberous sclerosis. Olya cried and could not stop, her husband reassured, and the doctors shook his hands: the shell fell into one funnel twice.

Sonya with mom photo: Diana Khachatryan

“When I found out about Sonya, it hurt me so much. A lot of ugly thoughts in my head sat, I even wanted to commit suicide. I was offended by my Sonya, who would suffer in this world. I will love her, no matter how mentally back she was. But the world is angry and cruel ... My mother and I have friendly relations - since childhood we have discussed everything in the world. I always dreamed of having two daughters and be a girlfriend. And now I don’t know what will happen to the development of my children, whether they will understand me. ”

If Alina had only one focus of increased impulse, provoking seizures, then in Sonya they are all over his head. A month ago, attacks began - the doctors prescribed Sabril to stop them.

When there is Sabril in the house, Olya is calm. But this medicine is not registered in Russia. Therefore, Olya is looking for people-classmates or just responsive strangers who send her one or two packs from Europe by mail. If Sabril is buying abroad, then the pack costs six thousand rubles (a child needs two packs of Sabril per month), but the parcels have the ability to linger (the customs did not give the last and did not give it out for a while), and the money to end. It happens that Olya buys Sabril in Moscow from resellers in online apoptics. The price there takes off to ten thousand rubles per pack.

The pension and a allowance for the care of Alina are 16,500 rubles (Sonya is trying to issue disability now). But both girls are now needed by medicine. They cost the family 24 thousand rubles a month. In addition to this, Sonya (and sometimes twice a month) should be taken to Moscow to the EEG in order to monitor the dynamics of seizures. The trip along with the consultation of an epileptologist and the examination costs 11 thousand rubles. And you also need to pay a loan for the apartment. Can a guard from a small provincial town who honestly earn a living, pull such expenses? With difficulty.

In Odnoklassniki there is a closed group where mothers from all over Russia are, whose children suffer from tuberose sclerosis. In this community they help each other, cry together and share cake recipes. Ole and Rafik are embarrassed that the girls are throwing away - everyone is as much as they can - Sonya to Moscow on a monthly trip, but they have no other way out.

“We underwent a course of chemotherapy, and people listed a hundred rubles to us, and some relatives said:“ Well, what, do our three thousand rubles will help you?! ” Before I joined the group, it seemed to me that I am the only one in the world with such a terrible diagnosis in the child (in Vyazma there are no children with tuberous sclerosis, and there are about one and a half thousand people in Russia. - approx. TD). Today, my friends on the Internet give me strength, morally support me. When we need to go to some city, we know that there are ours-there is always where to stop, with whom to talk. We are a family. Ordinary people do not understand us. If their child does not speak at the age of three, then they dismiss: and, nothing, he will do it later! And ours may not speak at all. Our children gave us the opportunity to look at the world differently. We rejoice at the little things. The fact that the morning has come that the sun came out. Living is happiness. Yesterday Alina said: “Mom, give a glass of water” - and I was so glad. She said a whole proposal! "

Last year, Olya appealed to the Department of the Smolensk region with a request to purchase a medicine necessary according to life indications (this means that there is no other such medicine, and only it can help Alina). In response, Ole sent a list of necessary documents. She collected all the papers, including the permission of the Ministry of Health for the import of Sabril (1460 tablets of 500 police) from France for a year, and sent them to the department of the Smolensk region, which, in fact, should allocate money for the purchase of drugs. But officials have been ignoring her appeals for ten months now. The deadlines are settled. The permit was issued until March 31 of this year.

Olga with daughters Sonya and Alina Photo: Diana Khachatryan

Olya was completely desperate and turned to the Children's Human Rights Project "Patronus", which helps children and their parents to defend their rights for free. Together with Olya, lawyers wrote a letter to the prosecutor’s office with a request to conduct an audit and take measures. According to the law, the state should provide for free medicines for children with disabilities. The answer came the other day. The prosecutor's office promised to consider a violation of the legislation on healthcare. In addition, lawyers turned to the compulsory medical insurance fund, which also promised that until March 31 (on this day the permission of the Ministry of Health ends) Sabril will be entered. However, if the medicine does not appear until the end of March, the procedure for obtaining permission to import will need to be reduced again. And it will hardly be easy, if possible. But the lawyers of the “patronus” are determined - on their account hundreds of cases won by the state.

“I now have one goal - to fight the state. If the problem with medicines is solved, I will become the happiest mother in the world, ”says Olya.

Now Olya had hope - the lawyers of Patronus took up her case. They provide free legal assistance to parents who are trying to defend their rights and get the law under the law. The project has existed for five years, and during this time the lawyers of Patronus won more than a thousand cases. Thanks to them, the state began to fulfill their obligations: sick children began to receive medicines without which they would not survive, and parents of children with disabilities-the payments assigned to them. Lawyers of Patronus every day write letters to the prosecutor’s office, draw up claims, go to court hearings and simply advise people on the phone. And you and I can support this big and very correct thing right now, having subscribed to a monthly donation. Let's make our life a little more fair. And whether the state will fulfill its promises, whether it will help those to whom he should help depends on us as well.

If your child is refused his legal rights, lawyers of the “patronus” are waiting for you: Patronus@nuzhnapomosh.ru.